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    Coloboma: Humans With "Cat Eyes"
    By Kimberly Crandell | September 6th 2009 01:44 PM | 165 comments | Print | E-mail | Track Comments
    About Kimberly

    I'm a mother of three, with an aeronautical engineering degree.  Although it's been a while since I've done any aircraft

    ...

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    As the story was told to me, the realization that my eyes were “different” wasn’t discovered until I’d been home from the hospital for a couple weeks. You know how it is - newborns sleep a lot, and eye contact is a bit limited when you’ve got a little one that is only awake a small portion of the day. Then of course the majority of those waking hours are usually spent with the eyes scrunched up in a squawk. But after settling down a bit, the day came when my mother and I finally got a good look at one another. And as I understand it, the first time I looked my mom straight in the eye - she had a bit of a panic attack. Because when she looked down at her youngest baby daughter, I looked back with eyes that didn’t look like hers - but looked more like our pet cat’s.

    The pupils of my eyes are not round, they’re more of a keyhole shape, or an upside-down teardrop. The condition is called coloboma, and is a congenital defect of the eye. Essentially, coloboma is a gap in part of the structure of the eye. The gap can be large or small, but normally appears in the bottom part of the eye. It is caused when a fetus’s eyes do not develop properly during pregnancy.

    Coloboma

    Coloboma forms while the baby grows in the womb. The eyes normally develop between the fourth and twelfth week of pregnancy, and start off as little buds. Usually the eye folds in on itself as it develops, which leaves a small gap called the foetal cleft. The foetal cleft helps maintain the blood supply to the developing parts of the eye. In the final stage of eye development during pregnancy, the cleft seals up from the back of the eye forwards and all the structures of the eye are formed. In an eye with coloboma, this gap does not fully close and remains in some of the structures of the eye. The condition occurs in about 1 in 10,000 births.

    Coloboma can affect one eye (unilateral) or both eyes (bilateral), and can affect a number of different parts of the eye. It can affect the iris which is the colored part at the front of the eye. It can affect the lens, the part of the eye which helps focus light onto the retina. Coloboma can also affect the choroid which is a thin network of blood vessels which help to keep the retina healthy. Finally, it can affect the retina at the back of the eye. Very rarely coloboma can also affect the optic disc or the eyelid.

    Coloboma with a more defined "keyhole" shape
    Coloboma with a more defined "keyhole" shape

    In my particular case I have bilateral coloboma, but only the irises are affected. Since the eyes form from the back to the front - that means that the rest of my eyes formed normally and my condition is more cosmetic than anything. My sight is fine, but I do suffer from increased light sensitivity because my pupils are larger than average. The iris, which usually limits the amount of light entering the eye by controlling the size of the pupil, does not work properly as a result of having coloboma and does not dilate normally in bright light. Sunglasses are my friend, and are so essential to my comfort on sunny days that they are almost like a security feature for me – similar to Linus and his blanket.

    I am fortunate that the impact to my vision is mild. There are some individuals that have coloboma that are not as fortunate. The effect coloboma has on vision depends a lot on which part of the eye is affected and how big the gap is. Normally the gap is at the bottom of the eye (where a 6 is on the face of a clock) and runs from the front to the back of the eye. Coloboma affects only the front of the eye if most of the cleft has sealed up. It can affect the eye from the front to the center and back if more of the cleft has failed to close. The further back the coloboma goes into the eye, the more visual problems it can cause - especially if the retina is involved. If this has happened then central vision may be affected, and the individual may be legally blind due to the inability of the eye to focus properly. In some cases, coloboma affects not only the eye, but the structure of the eyelid as well.

    Coloboma affecting the eyelid

    The existence of coloboma may also be an indicator of other hidden issues – other organs or structures that did not form properly before birth. A child born with coloboma is checked for symptoms of certain syndromes known to include coloboma, such as CHARGE, a rare condition that stands for:

    C – coloboma
    H – heart defects
    A – atresia of the choanae (problems with the nose passages)
    R – retarded growth and developments
    G – genital hypoplasia (undescended testicles)
    E – ear abnormalities

    What causes coloboma? Most cases appear without any previous family history. In some families coloboma can be inherited. If a child is diagnosed with coloboma it is advisable for the child's parents to have an eye examination. This is because coloboma can be present without causing any visual problems; therefore a parent might have the condition but not know it.

    In my case, there was a distant genetic link. I had a great (great-great?) uncle that had coloboma in one eye. However, I have an older brother and sister, and neither of them have it. I also have three children, and none of them were born with it either (although when they were born I made sure that as soon as the fingers and toes were counted, that their eyes were the very next thing the doctors checked). They all theoretically have the gene though, so it may pop up again in some future generation.

    In some cases, coloboma can also be caused by accident, injury, or surgery. The resulting gap in the eye from one of these external causes would have similar impacts to a person’s eyesight, dependent upon the severity and depth of the gap.

    There is no “cure” for coloboma. There is no surgical way to close the gap in order to complete the formation of the eye after the fact. For individuals like me that have coloboma of the iris, we compensate with sunglasses and shade hats. For those that have more severe cases involving deeper layers of the eye, unfortunately not much can be done with corrective lenses or surgery to mitigate the impact.

    I recognize my fortune in having a very mild case of this condition. The impact to my eyesight and daily life is minimal, and it’s served as a conversation starter at stores and BBQ’s more than anything else. I am not self-conscious of my eyes, and honestly usually forget that they look different until someone else notices them and makes a comment. I am instantly aware of the people that tend to make eye contact when they speak however - because those are the ones that will suddenly stop mid-sentence, crane their necks a little closer, and say, “Hey, your eyes look like cat-eyes!” Or, “Uh, are you wearing contacts?” I have never had anyone be rude though, mostly just curious. And just about everyone is interested in learning more about my eyes, and why they look the way they do.


    Yep - that's me

    As a kid I never quite understood all the fuss. The subject would sometimes come up during get-togethers at our house, and suddenly I would get trotted out so that those that had heard about my eyes but never seen them could get a look. I was my sister’s show-and-tell item more than once. And there were occasional days in grade school where I heard a “cat-eyes” reference whispered as I went by – but even at that age most kids were curious instead of mean about it.

    The very worst part of having coloboma was while growing up in Colorado, walking to school on sunny mornings after a fresh snow. The sunlight reflecting off the snow on the ground was more than I could handle. My eyes would squeeze shut until they were mere slits, yet they would continue to water so much under the strain that tears would roll down my face without end. At this age, my mom would buy me sunglasses – but they would always be lost within an hour. So most times I had no protection, and the only way I could make my way to school was by walking behind my sister and focusing on her shadow on the ground; her shadow was the only respite in an otherwise unending field of bright white light. I would trudge behind her, head down, following that shadow until we would reach the protection and relative darkness of our school building. I would experience such tension during the walk to school on such days, that more often than not I suffered from a headache the rest of the morning. Even today, my “dream city” is Seattle. My favorite days are overcast and cool, since I am neither a fan of sunshine nor heat. My sun-loving husband however disagrees, and instead keeps me comfortably outfitted with sunglasses instead of going house-hunting in Washington state.

    He and I did visit Seattle once though, and while we were there we had lunch on top of the Space Needle. Our friendly waitress came over to take our order, and when I looked up at her you’ll never guess what I saw – a pair of eyes just like mine looking back at me! We stopped, looked at each other, and both broke out in a huge smile. For both of us this was the first time we stumbled across someone that shared our rare trait. It was refreshing for once to be the person surprised by an unexpected pair of “cat-eyes.” And the fact that my eye-twin chose to live in Seattle – a coincidence? I think not.

    Comments

    aaanouel
    Very interesting and nice story...
    hey ,my son is 7yrs old and he has bilateral coloboma.i first noticed when he was about 3 weeks old.he has problems with sensitivity to the light and will possibly have to wear glasses,will find out nxt time he visits opticians.like you everyone that has noticed his eyes are fascinated by them,and he gets called cat eyes by a few kids at school,but no one has ever been mean about it.i dont think his case is hereditary though as i dont know of any family member having it.my son does seem to have a few other problems but not sure if these are related,i.e:flat feet and quite small for his age,but then i am not that tall so could just be that he takes after me!any way i found your story very interesting and nice to read about another person with coloboma.thanks

    Kimberly Crandell
    Kelly, thanks for your comments and for sharing your son's story.  It sounds like your son's condition is very similar to mine and am glad that he doesn't have any vision impacts outside of his light sensitivity.  I'm just now thinking I need to get glasses... but I think it has everything to do with me turning 40, and is not at all related to my coloboma.  lol...
    im only 15 and i have this problem in both eyes both hazel but my right eyes changes a liltte barely able to tell a difference i am very sensitive to light i get migraines from straining my eyes to see it sucks when i want to go outside but cant because of the sun i wear color contacts sometimes because i dont like people seeing them when i do have my contacts in i see blue (color of my contacts) and it blury i have yet to find anyone i know that has eyes like mine but i someday will

    my names kyle from missouri and my eyes are a crystal blue but my right eye is always bigger than left pupil and all like a witch's in a scary movie most usually dont notice i get migranes e z to on left side of face next to that eye n bright light kills like the sun shining off snow or somethin will gimme a head ache i always thought maybe it was cuz of my near drowning experience but the other nite my eye (left) turned into a cats eye n im super freaked out doesnt happen a lot but usually when i walk in and outta light im afraid to go to the doc becuz i dont want surgery on my head guess theres glasses but wondering what u all had to say advice be gr8ly appreciated thanks

    I am 43 years old. I was told at age 12 that I have bilateral coloboma. I believe that I was born this way... I just found out when I was 12 years old. As far as I knew, no one else in my family had this condition. I am a black woman (not that it matters),but my eyes are very dark brown so I did not get a lot of attention. My vision is normal but I did have light sensitivy, especially to the sun but the worst was the flash from a camera...my eyes hurt for about an hour. Anyway, 1 of my 6 children has unilateral coloboma and another 1 of my 6 children has bilateral coloboma. It is definitely in my genes. I have no grandchildren to see if the condition has gone past my children's generation.

    I am 43 years old. I was told at age 12 that I have bilateral coloboma. I believe that I was born this way... I just found out when I was 12 years old. As far as I knew, no one else in my family had this condition. I am a black woman (not that it matters),but my eyes are very dark brown so I did not get a lot of attention. My vision is normal but I did have light sensitivy, especially to the sun but the worst was the flash from a camera...my eyes hurt for about an hour. Anyway, 1 of my 6 children has unilateral coloboma and another 1 of my 6 children has bilateral coloboma. It is definitely in my genes. I have no grandchildren to see if the condition has gone past my children's generation.

    Thank you for letting me know about ur son, i have a son he is 5 almost 6 and he also have it on both eyes, at first i was a little be concern about him at school and not been able to see. however he does see and actually very good ;) he is also very sensitive with the light outside.nice to know he is not the only one out there. thanks ;)

    MY EYES R THE SAME BUT BROWN

    I have a unilateral coloboma. It is really amazing when I look at the picture of your eyes, because it almost looks like I am looking at a picture of my own eyes, only both have a coloboma! I have not had much trouble with my vision until recently; I just turned 40 and am having a hard time seeing things that are closer up. I have made an appointment to see an optometrist, but don't really know what they can do to help my vision. It is very interesting to hear the stories of others with the same thing.

    I had a friend in grade school who has the upside down tear drop pupil. Everybody actually thought it was really cool and he got alot of attention from girls because of his eyes.

    Hi,

    I have Coloboma in my left eye. Bright lights have not been a problem to me, as I do not preceve light from that eye.

    I have normal 20/20 vision with my right eye, and drive normally (well to fast for some). I am 45, and repair air conditioners. Bright light does not effect me, in fact a bright light can be shined into my left eye, with no pain or anything. The right eye has normal sensitivity to light, and can not be exposed to bright lights.

    Very interesting to see that some have it in both eyes. Is your vision normal?

    I have been thinking about getting contact lenses, and with a 3/16" hole in the center, to make the eye look normal, and perhaps restrict the "Extra" light that is coming in. Then I might be able to see from the left eye, that is the hope anyway. But that might give me a headach! Because I have never seen anything in 3D!

    Fred.

    My son was born with eyes that are just like your's, except his are almost a crystal blue. I'm almost positive that there is a depth perception problem too, cause he won't look down when he's walking.

    Just needed to share that and thank you for sharing your story, I was told that eventually, he'll end up blind due to a detached retina

    Hi Lyndy Kelley,

    I am sorry to hear about your son with a detached retina. I hope they can do something for him, so that he can maintain his vision. Does it effect both eyes? How old is your son? If over 3 you might want to start teaching him brail, or how to read early on, so he will be able to continue if he does go blind.

    I have a partially unfinished left eye, and see normally from my right eye. I have been this way since birth, and am now 45, and drive normally ect. I do not need glasses at this time, yet might in the future.

    I have been told that people with retina problems might also suffer from diabetes. Is there any history of diabetes in your family? Have you had your blood sugar level checked? Has he? Normally it is tested early in the morning, after not eating about 8 hours or more. Kinda hard on a young one, who wakes up hungry and knows that crying gets food into the tummy, but a quick blood sugar test, and he can start to eat.

    Many pharmacies will give out a free blood sugar test if you ask nicely, and show up early in the morning - having not eaten in a while. A reading above 120 (without eating the past 8 hours) is cause to visit a doctor, a reading above 300 and you should check into a hospital. If you happen to get tested during the day, any reading under 200 and you are normal, unless you just ate, then a reading of 150 - 225 might happen, and is still considered normal.

    My neice was at the hospital with a reading over 400, and she was type 1 diabetic. She was able to have a little girl of her own last year.

    Keep talking with your opthimologist each year or so, and ask about the detached retina, and see what can be done about it. Sometime they should have a cure.

    Fred.

    Hi Fred,
    Well, I have some really good news...my 6 y/o lil cats eyes boyo does NOT have a detached retina in either eye....cried when the opthamologist told me this.
    He does believe, however, that he may have a slight depth perception problem, which may be corrected with glasses, IF we can get him to wear them.
    We are being sent to a specialist who works with children with special needs, which I'm excited about.
    I thank all of the folks who have responded to my post, and all the info I received has been put into use.
    Lyndy

    Kimberly Crandell
    Great news, Lyndy! 
    Hello your story really touched my heart.... Im in tears. My son has the same defect, hes two it breaks my heart. I notice as soon as I first looked at my pride and joy. The doctors told me that the right side of his face was swollen due to birt h. I knew soon as I took one look at him that something wasnt right. He also had a skin tag on the right side of his ear.. Which he had surgery done to get it removed.

    I want to thank you for your very thorough discussion of this topic. My daughter is 2 mo old, and her eyes look EXACTLY like yours. She was like a kitten for weeks after she was born and did not open her eyes... We have a well-baby visit in two days, so I will mention it to her doctor, but your honesty and candor have really helped ease my mind about possible ways it could impact her. We live in CO too- guess I'll get some baby sunglasses :)

    My daughter has a unilateral coloboma, I was the same - I didn't notice till she'd been home around 2 weeks, and OMG I freaked out !
    She is fine and had to wear glasses from just before her third birthday till she was 14.
    Now she is almost 16 and has been told if she wants she could get a coloured contact lens to cosmetically change the appearance of the teardrop shaped pupil, but at this stage she has declined.
    Thanx for sharing your story :o)

    Kimberly Crandell
    Thanks for your comments, Fiz.  I'm glad to hear your daughter is doing so well - and that my mom isn't the only one that freaked out upon discovery of her daughter's unique eyes.  :)
    My daughter has bilateral Coloboma. She sees an eye specialist at NIH. Her eyes look just like yours however she does have vision issues. She wears glasses to help compensate but still has trouble seeing long distances. However she's able to see well enough to ride a bike ,a razor scooter, go to a regular school and she can read and watch TV. Like your mom we didn't know about her eyes until a few weeks after she was born. Then panic as we weren't sure she could see. Well she's 13 and doing well just like any teenage girl. She has heard a few cruel remarks at school and a few people in stores who squeal out "look she has cat's eyes", but all in all she's been handling it fine. She wants contacts but I'm hesistant due to the protection eyeglasses offer since her left eye is stronger than her right. As far as colored lenses go, she says no because she's fine with her eyes. My wife and her 4 siblings were tested and to our surprise my wife has Coloboma. It's so slight you can't see it with the naked eye. She doesn't have the vision issues associated with it also. No one else show signs of it. The only person we've ever seen with it was a young pretty nurse who took care of our oldest son when he was hospitalized (appendix) years ago. It was exciting to say the least ( she saw my daughter and was very excited also). Good luck and nice article.

    Kimberly Crandell
    Bill, thanks for sharing your daughter's story.  It sounds like she's doing great and that's wonderful to hear.  Like I said, I had very few mean remarks growing up - and even most that called me "cat eyes" did it more out of interest and curiosity than out of cruelty.  I'm not surprised she doesn't want to disguise them with contacts - I always kind of liked the uniqueness of mine.

    An interesting note about your wife discovering she had it as well.  I makes me wonder how many out there have it and just don't know because they've had no reason to be checked for it.

    Thanks for your comments, and good luck to you and your daughter.
    My son was born with colomba of his iris. They found it at the hospital and of course beign a first time mom at 21 it was scary anyway .... this was a shock. At first they thought he might have CHARGE, or even be blind but then all his other tests came back negative. He does however have to wear glasses at 4 1/2 now, and has since he was 3. He is fine with it. He has not had any cruel remarks at school, but he is to the age that I want to educate him about it. I am currently writing a paper for college about this condition in order to educate everyone in my family, that is how i found this website. Hearing others say that their vision is still fine makes me happy, I want Nicholas to have as normal as a life as he can. He played soccer, t ball and is interested in flag football now. He rides a bike and his four wheeler with no issues. good luck to all of you and thank you for sharing your stories, noice to know were not the only ones.

    Kimberly Crandell
    Sara, I also did a paper and speech about it while I was in college.  I went to a local ophthalmologist near my university and interviewed him - and I think I made his day because I was the first case of coloboma he had ever seen in person.  He dragged me around the office and showed my eyes to everyone, and had almost as many questions for me as I had for him.  He was incredibly nice and was a great source of information.  Good luck to you!
    Kimberly,

    I am so happy that I found this website. I know that the condition is rare, but never saw any pictures of other "real" people with the same condition.

    In grade school, I learned to close my left eye, if anyone is making fun of me. But at 6' tall, in high school, I did pretty well, as not many where as large as me. I was usually larger than most the students in my class.

    My girlfriend is at school training to be a assistant to a Opthomoligist (SP?) and wants to show me off to the class and instructor. I don't mind, and want to show the students something they could only see in books otherwise.

    My hope is to get a contact lens that will reduce the light going into the eye. At this point, I can have a bright flashlight shine into my left eye, and tell the light is on, however the light will not cause me to blink. My left eye does not focus on anything, but I can tell if someone walks up on that side, if there is a change in the light in the room.

    I think that by recuding the size of the eye pupil opening, with a contact lens, that I might be able to focus on something. I think that it is to much light coming in that is causing me to ignore the light in that side, and never look out of that eye, as nothing has ever been in focus in the left eye.

    The huge advantage is that I can find things with my right eye, that someone with 3D vision might not be able to see. And I can tell 8-32 and 8-24 nuts apart, when a box of them fell into an area, I was able to sort them out quickly!

    Fred.

    Kimberly I want to thank you for this website. You have been a blessing to me! I was also born with a coloboma in my right eye and mine was just like yours. When I was 40, I found a doctor that sutured my "keyhole" iris to make it look round. I am very pleased with my surgery. My coloboma is large and goes from my iris to my retina. My vision in that eye is not good. I was also born with a cataract and had an intraocular lens implant the same time my iris was sutured together. My vision will never be perfect in that eye even with glasses. Growing up was very difficult for me and I always felt so abnormal because of being teased and called names by kids and laughed at. I always wanted to have someone to relate to and never got to meet anyone who had the same condition. After many years and finally having surgery at 40, I finally feel like a "normal" person and no one laughs at me anymore. I had been to several doctors hoping I could have some kind of surgery to make my pupil look round and was told each time that nothing could be done because of the iris being too delicate. Years later, a technique was finally developed and I found a wonderful doctor! I am a stronger person emotionally because of my experience and hope that I can help someone else dealing with the same condition too. Thank you again Kimberly, I have been touched by an angel!....Karen

    my daughter also has bilateral coloboma... she had cataracts as well. Anyone else had the coloboma along with cataracts??

    My son also has colobomas along with cataracts, he is 14 years old now.

    Yes, I was born with bilateral coloboma of the iris as well as cataracts in both eyes and stigmatism. I was very young when my parents realized there was something wrong and have gone to Boston for medical treatments my entire life. I am, and always have been, legally blind in both eyes. My mom inquired about her donating one of her eyes for a transplant so I'd at least have one good eye. But they explained that the nerve endings never formed behind my eye in those places so it was not possible. As a toddler, I had 2 surgeries, one on each eye to correct "cross eyes". The doctor advised my parents that I would be able to do most things except drive a car, fly a plane etc. I wore eyeglasses since I was 4. I excelled in school but even with glasses, I was still legally blind & had to hold things close to read. I heard my share of cruel comments when I was younger & also as an adult. Just simply ignore them as they are ignorant. I am
    more than happy to explain my situation when someone asks rather than ridicules.
    When I was 11, they found that I had a detached retina in my left eye, my good eye previously. I could only see light or
    dark & didn't realize as my right eye automatically took over. They immediately operated & put in a buckle to hold the
    retina together. Two weeks later, it had separated again. They repeated the surgery, this Time with 3 surgeons, but 2 weeks later it separated again. I went in about a month later as they wanted to monitor how quickly I'd be totally blind in
    that eye & it the buckle had reattached- no medical explanation at that time(1977). The doctors called me a "Christmas
    miracle". My right eye took over as my stronger eye & I could no longer read with my left eye. I was fitted for contacts at age 16 as this helped with peripheral vision. I continued to excel in school but not in sports as depth perception was
    always an issue(makes tennis real tough). I continued on to college & have a successful career.
    Forward to the 90's and the cataract in my left eye started to grow. It was time to remove it in 1998. This was very risky
    due to the buckle holding my retina together-even the top doctor in Boston was nervous but she successfully removed
    the cataract and the buckle stayed in place! They could not do a lens replacement due to the situation so this eye was
    used for distance once refitted for a new contact(my version of "distance".) Two lasers have since been done as a
    haze/halo effect forms-almost like crinkled Saran wrap over the eye. The laser removes it and all is clear again. My
    doctor did note that since I was so young to have this surgery, pearls are now growing on the edge but so far not
    hindering me.
    The cataract in my right eye started to grow in 2003/2004. By 2008, it was very dense (they couldn't even see if the
    retina was still attached). They refused to operate at that time as the right eye was the only eye I could read with thus
    making it too risky. By April 2010, it was extremely hard to get around. I could still read but with the aid of enlarging print
    on the Ipad or using a large monitor. When trying to read regular print, I had to use a magnifying glass & a flashlight & it
    was extremely difficult. The doctor saw me reading the Ipad & immediately said "I'm not touching you with a knife".
    Then she examined my eyes & said it was time to take the risk-no other choice. She explained that it was the width,
    depth and color of a Werther's original. She said if this were in anyone else's eye, they would be blind. But because of
    the coloboma, I had the ability to look around the cataract. It always looks like I'm looking to the side when I look at
    someone or something straight ahead. I just had the surgery 8/26 along with a lens replacement and so far so good.
    The retina stayed attached, optic nerve looks good etc. I'm still healing & can't read normal size print yet(just the
    headlines in the paper) but this is improving daily. I realize I'm not out of the woods yet regarding my retina, getting
    glaucoma etc until this has healed but I remain optimistic that all will go well and with no complications. When I came
    home last weekend, it was literally like seeing things for the first time-totally amazing!
    So anyone who has children born with both bilateral coloboma of the iris & cataracts, please treat them normally and
    push them to succeed. I am completely independent. I can't comment on having children as my husband passed away
    at a very young age. However, I work in finance working with numbers/analyzing financial statements, etc. So it is all possible. I can only hope that me sharing all this helps at least one person.

    My son has just turned 3 and was born with coloboma of the iris and cataracts in both eyes. He had surgery to remove the lense in his right eye when he was a couple months old. He has had to wear a contact ever since but doesn't seem to want to used that eye. His left eye has a small cloud of cataracts on it and now the doctors are thinking of removing that lense. He seems to see very well out of that eye so taking the lense out is very scarey to me. He plays like any other child and watching him you would not think he had any issues with his sight. The only thing that I've noticed is he has yet to learn colors but he is just 3 so I still have time before being sure he can see colors or not. Is there any advice that you could give me to help make sure my son continues to see well. Thank you, for so long I have felt like there wasn't anyone who had both coloboma and cataracts.

    My son was born with a genetic condition, Lowe's Syndrome, and was born with bilateral cataracts (cataracts in both eye's). It comes with a lot of other symptoms but that is what relates to this story. So when he was one month old we had them both removed through surgery and now he has no lenses, so had to wear contacts since he was about 2 months old (he is now almost two). Now he has glaucoma from the surgery, and so we have to give him eye drops every morning and night. But anyways, since the surgery I have noticed that one of his pupils is misshaped on one of his eyes. But that was from surgery when they had to use tools to pull back his pupils bigger to get to his lenses. I never knew that it could happen in the womb. Thanks for the education.

    I always thought your eyes were THE COOLEST!

    -Clinton

    Kimberly Crandell
    Thanks Clinton...   :)
    Yeah I gotta say those eyes are the BOMB! I have normal blue eyes and wish i had coloboma lol. Question tho, is coloboma more or less prevelant depending on the eye color?

    -Bobby, Connecticut

    Kimberly Crandell
    Thanks, Bobby.   And to be honest, I don't actually know if there is a correlation to eye color and occurrence.  I do know that because I have light eyes, it's much more noticeable.  If I had brown eyes, I doubt anyone would even notice I have it.
    I too have the same exact coloboma in both eyes... mine look like perfect keyholes straight down. I as well am very sensitive to bright light as well instant light, * like turning on a light switch * i normally have to look down or away. I have brown eyes, so it is not so noticible but when i am in a face to face conversation it is funny when ppl notice them, they kinda pause and normally ask, are you wearing contacts? i find it funny, and i rather like my eyes as i dont have any visual issues, minus bright lights...

    None of my family members have it.. nor do any of my children.. just an odd ball..

    =) - thanks for the article.

    My daughter now 19 and a twin has bilateral coloboma. Her twin brother does not have coloboma. Her sight is fine, she wore glasses for short sight for a while during primary school. She did have the odd "cats eyes" comment at school and is quite frequently asked if she is wearing contact lenses. She has not considered contacts up until now as she is very happy with her eyes. Generally she has very good remark about her eyes, alot of people are just curious which doesn't bother her.

    Your article was very interesting, it is such a rare condition, my daughter hasn't met anyone else with coloboma as yet!

    Kimberly Crandell
    Sue, that's interesting that your daughter has it, but her twin brother does not.  It does truly illuminate how rare it is, and it is obviously the result of a very uncommon alignment of recessive genes.  As I mentioned, none of my parents, siblings, cousins, or children have it.  Who knows.. maybe a grandchild or great-grandchild in my future?

    And just tell your daughter to keep her "eyes" open.  You never know when she'll run into someone with the same unusual eyes.  It will certainly be when she least expects it.  :)

    Thanks for sharing Sue, and good luck to you and your daughter.
    my daughter amelia has a coloboma we didnt find out until she was about 3wks old, when i saw it for the 1st time i freaked out aswell as we had waited years to concieve and i did everything by the book during my pregnancy, and couldnt help but feel that i'd done something wrong, anyway we took her to the hospital where she was checked over, her coloboma is different shape to any other the docs there had ever seen hers goes to the side of her eye and is shaped like an easter egg!! thats the only way i can describe it lol. shes checked yearly and so far so good, they think her vision is fine at the moment she,ll be 3 soon and a real chatterbox and we ask her about wat she can see and all seems ok, thank god, i'm so glad i stumbled across yours and others stories, do u know anyone with a colobma thats a different shape??

    My goodness- my story is nearly identical to yours. The snow was certainly a killer-- I still remember the pain from looking at it. I never had sunglasses till my wife asked me why I squinted all the time and made me go get them. I guess none of us knew any better in my family.

    I have sent you a link to my Facebook story above with lots of photos. Thanks for writing this article, Feel free to send me a message if you want to discuss. I am a business executive and a writer. My mail address is wfhenderson@yahoo.com

    Best, Bill Henderson, Philadelphia PA

    The link to my Facebook page with a similar story and lots of photos is at:

    http://www.facebook.com/album.php?aid=2043469&id=1000130806#/album.php?a...

    Really enjoyed your story.

    Bill

    Kimberly Crandell
    Great photos!  Thanks for sharing.  It's always nice to find someone with a similar story.  :)
    Thanks for sharing. I have been thinking about sharing like you have to try to help others learn and deal with what we have dealt with. Both of my eyes are affected but in a different way than yours. My pupils are normal, but they both reside at the bottom of my iris instead of in the center. I am 35 years old now and have a beautiful wife and two beautiful childeren. I was so worried that my childeren would have coloboma, but my prayers were answered when they were both normal. I feel very fortunate to have pretty good vision and a good pair of polarized sunglasses.

    Thanks,
    Chris

    Kimberly Crandell
    Hi Chris - I've had nothing but a positive response from others when I shared information about my eyes.  I know several people that have known me for a while have been nervous about asking me about it - because they weren't sure if I was comfortable talking about my eyes and why they looked the way they did.  But once I started discussing it, they were fascinated and just wanted to learn more.

    And as interesting as it has been to grow up with these unusual eyes - like you I was pretty adamant that the doctors check all three of my children immediately after they were born.  As soon as they counted fingers and toes... the very next thing was to take a good look at their eyes.  I'm sure none of my newborns enjoyed having a flashlight shone in their eyes minutes after arriving, but I wanted them checked right away since they obviously had a greater than average chance of having it themselves.
    I have coloboma in both of my eyes and have had it since i was born. I can see pretty normal for the most part except when it is really sunny and sunglasses are my best friend as well!! i do wear glasses for reading or school work though. i have never met anyone with eyes like mine but people notice it everywhere i go and i can always tell when they are stunned so i just say "yes theyre real" and look away its gets soo repetitive and some people are really curious about it and others are just rude! im 21 now and sometimes wonder if my children will end up with it because my great great grandma had it in only one of her eyes so it will be interesting to see! im glad there are other people who have the same experiences i do with our neat eyes!!!

    Kimberly Crandell
    Olivia, you story sounds so familiar!  I'm glad you don't have anything more severe than light sensitivity.  My friends and family laugh because I always have a collection of sunglasses scattered about, but I'm in real trouble if I go outside without them.  I've just settled with buying several inexpensive pairs because they're always getting misplaced (and my two little boys are always trying to run off with them as well).
    My 9 year old son Cody was born with Coloboma in his left eye and has a stigmatism in the right eye. He has blue eyes and if you look closely, you can clearly see that his pupil is not round. We found out the news when he was about 6 weeks old. He's had glasses since he was a year old and wears them all the time. He also has prescription sunglasses and wears a visor because of the increased senstitivity to light. No one has ever made any comments to him about the way his eyes look. Our opthamologist recommended that he not get contacts because of the protection the glasses offer. With all that said, he does have some delays. He attends a regular Catholic School, bu uses some visual aids to help him out. The school has also made accomodations for him.....bigger lines on papers, darker print, and he always sits in the front of the class. He still cannot tie his shoes. He has some spacial vision issues as well as depth perception. He struggles with basic things that you would assume a nine year boy would be able to do. However, he's been tested at Childrens Hopsital and he is very intelligent. He has a great sense of humor and is wise beyond years. We were told he may never drive a car because of his vision, but there certainly are worse things than that. Even with all his quirks, I wouldn't change a thing. He is my handsome, extremely loving son. By the way, there is no history of Coloboma in my family.

    Kimberly Crandell
    Julie, thanks for sharing.  It sounds like your son is amazing.  I have to tell you, I was very nervous about learning to drive.  It wasn't driving during the day that made me nervous, it was driving on dark roads at night that made me concerned.  Even when I was young, being a passenger in a car at night that was suddenly hit by the bright lights of an oncoming car absolutely blinded me - especially on a curvy road when someone came around the corner with their high beams on.  I had to learn to drive in situations like that with my eyes diverted to the painted line on the shoulder to guide me because I couldn't look ahead.

    In general, I just avoid driving in situations like that unless absolutely necessary.  I just don't feel comfortable in that environment and know my limitations.

    Thank you so much for sharing your story.  The best of luck to you and your son, Cody.
    Im 13 and I have coloboma in my right eye.Most people ask if I have a hole in my eye.I have blue eyes and most people find it hard to look in my eyes for too long,even teachers can't look in my eyes for too long but its your stories really cool.I never realized coloboa could be the answer to why my eyes are soo sensitive to light as for years my eyes water almost immediatly and im constantly squinting in the light.Thanks for sharing your story

    THEY ARE SO COOL!!!!!

    Thank you so much for telling your story. I noticed my daughter had what looked like a cat eye while I was still in the hospital after giving birth to her. I was really scared when I saw her eye and instantly started freaking about how she will handle other kids some day as I remember getting made fun for silly things. Since she was a very alert newborn I noticed that her eye was focusing as it should be and was able to follow objects and it was reacting to light ok. Although I did notice that when we took her places she would always close her eyes when we entered into sunlight.
    I really enjoyed your story. I hope my daughter doesn't see it as an imperfection someday but something that makes her more special and beautiful like I see her.

    My son is 8 months old and has bilateral coloboma. He too was really alert when he was born and my husband and I noticed almost right away that his right eye in particular looked like an upside down tear drop. When the doctor told us about CHARGE and the possible genetic disorders associated with coloboma I couldn't stop crying. We couldn't get an appointment with an ophthalmologist for almost two months of constant worry about whether his eyesight would be affected. We have since learned that his coloboma is a purely aesthetic thing and I have become completely enamored with his eyes. There is certainly something beautiful and memorizing about this unique condition. I wondered about his sensitivity to light and am grateful for the postings that have revealed my assumptions about sensitivity to probably be right. We currently live in Tucson, one of the sunniest cities in the country, but I have be rallying to move closer to family in New England, now I've got another reason to love cloudy days!
    I too have had worries about whether he will be treated differently or chided by children as he grows up and all of the above comments have been really reassuring. The comment we have gotten most often from our friends is, "Watch out, he's gonna be a big hit with the ladies!"

    My daughter aly was born with bilateral coloboma and it looks like she is doing fine with seeing and doing things a normal baby should, However i received a genetic blood test results that was taken not too long ago and found out that she has abnormal blood, but so far no doctor has ever seen this or if its even attached to the coloboma, so they cannot even give me a name or idea if it will cause problems later and life, i was hoping maybe somebody may have heard of it.

    hi kimberly, found ur page on a search. I am 49 and have had the same all my life too. I do find that the color of my eyes will change colors from grey to green and mixes inbetween. I did have problems with my eyes, with a lazy left eye. With surgeries when i was younger, and growing up just using my right eye to see and judge things. I can see out of my left eye, but they do not mesh together like normal. So judging distance is a problem for me. I have always had light sensitivity, with my left eye closing always when in sunlight. Wasnt til later in life that i wore sunglasses to compensate and even cloudy weather I will wear my sunglasses. I wore glasses till i was 19, to try to strengthen them. When i was 19 and my last visit with my specialist, he said they wont change and the glasses wouldnt help anymore. I find now that i need reading glasses, but just for small print. just wondering, how narrow your pupils get? Mine can go from oval to almost very straight up and down with points on both. And even more so when my eyes are tired. And I have noticed that I can see in the dark a bit better than most people. Dont know if that is associated with this condition, or because I preferred to walk in the dark when younger. have never met anyone with my condition before, but a few people told me they knew someone else. with my 3 children, only my daughter had problems but with cross eyed. which i think i had when i was born too. thanks for sharing ur story.

    I have coloboma in my left eye, and even though i've grown with it all my life (being only 2o yrs old lol) i still find it strange yet amazing to look into someone else's "cat eyes" also. I saw a man one time where I worked who had coloboma in one of his eyes. And when he walked by, all i could do was stare in amazement. he was the first one like me that i had seen. I was in shock I suppose. Since then I've meet two others who have coloboma also. I've always been a "show and tell" type of thing also, not very fun when complete strangers are staring into your eyes. Kind of awkward. Sunglasses are my best friends:) good excuse to have like 20 pairs! lol.
    This is my first time actually researching into it, and i found your page. thank you for sharing:)

    Hi,

    I had coloboma and had it permanently covered with a intraocular implant.
    They are offering the procedure for free with people that have the condition.
    Hello,
    My daughter was born Sept. 20th of this year and the very first time I looked in her eyes (the day she was born) I knew she had coloboma. I was so worried at first because I was worried that she wouldn't be able to see so well. She has it in both her eyes and she seems to see alright. She focuses on my face and follows things with both her eyes. I was always worried that my kids would have this trait because I have it in my right eye and can't see very well at all with it. My brother has it in one of his eyes and so does my aunt and her twin daughters so it runs in my family I guess. Lucky us. I still worry for her because I don't want her to get picked on because she is different. My two year old has also noticed her eyes and mine and calls them snake eyes. I am teaching him that they are not "freaky" they are just different and unique and that's ok. I'm still scared for her eyesight though. I'm hoping for a cure, if one is needed.

    Kimberly Crandell
    It sounds as if her condition is probably similar to mine.  As I mentioned, my experience with other kids was more about curiosity rather than cruelty.  The most common response I've received by far is, "That's cool!"  My biggest suggestion would be sunglasses - both because it helps with light sensitivity, and if she does become sensitive about being asked about her eyes it's a great way to go incognito.  But I would not be surprised if as she gets older she doesn't embrace the uniqueness of their appearance.  Good luck!
    my name is amanda and i am 21. i have coloboma and my vision is deteriorating. my left eye is underdeveloped and i was born with a left nostril largerr than the right and a cleft lip. what causes coloboma? i spent my whole life not knowing why i was so different until last year when a eye doctor finally told me about coloboma. amandasteder@ymail.com

    i have it in my right eye, and since my eyes are a really dark brown, not a single person has ever noticed unless i point it out.

    I have one eye with coloboma eye with the "cat eye" effect. Because it is only one my normal eye is a pretty dark blue while my coloboma eye is a yellow-green. It's always interesting to me to see who looks me in the eye when they talk to me and which odd part of my eyes people notice first. Some notice the color difference, some the pupil size. It's a weird thing to have coloboma but I am sincerely glad I have it. I used to get teased in elementary school occasionally but once I hit middle school my eye always got comments about how awesome it was and that has continued ever since. It's so interesting to hear from someone with similar eyes! Thank you so much for posting this article!

    My son has Coloboma which has affected him quite badly in his right eye with very limited vision; and only mildly in the other eye and not noticeable. He has no peripheal vision in his right eye and can only see when very close to the school board and glasses cannot help-he only seems to use his left eye for vision and that is pretty much 20/20 which is good. He now has a cosmetic lens from the Optometrist which makes his right eye look normal and my son is a different boy, no longer wanting to grow his hair long and cover his eye etc. He also has some other genetic side effects such as a slight heart murmur etc. It's great to read the other stories and yes I got an almighty fright when I saw my sons eye for the first time as a baby.

    Hi Sue,

    Let your son know that he is not alone.

    I have almost the same problem, I do not get focused light in my left eye, and my right eye is 20/20. I am 45, and found driving is pretty normal. Life is actually pretty normal for me.

    I did not have the ability to have a contact lens when I was young, but look forward to getting a contact lense if I ever want to have a normal looking eye.

    Fred.

    Thank you soo much for your reply Fred. It's great to know that driving is normal as that is something we have been a little concerned about. Thanks for your reassurance and it's great to know there's really nothing to worry about. Thank you and take care, Sue

    Hei.Can i have some email adress from mothers who have a baby with coloboma(cat eyes) Its nice with talk with some one.My baby she have in both eyes and im so worried.
    Kimberly it was such a nice story :)

    Hi,

    Anonymous,

    While I would like to post my e-mail address, it seems like many who wnat to send out spam mail search places like this website, and then send tons of un-wanted e-mails.

    You are welcome to post your e-mail address, but a suggestion, that you open a new account, something like Coloboma217@ hotmail, so that if you do get spam mail, at least it will not be your primary e-mail account.

    I will be happy to write to you, I have Coloboma in my left eye, and see normally with my right eye.

    Fred.

    Hi Fred
    Thank you very much for your letter.Is it possible to find you in facebook?

    Kimberly Crandell
    If anyone would like to contact another individual, you are welcome to click on my profile link here on Science 2.0 and send me a message.  I can help you exchange email addresses between each other. 

    Thank you for all the kind words and comments everyone.  Growing up I felt like I was the only one with this condition.  It's been wonderful to hear from so many of you that have similar stories in your families.
    Hi,

    I am not on facebook.

    Fred.

    Hi!
    I add here my email aadress ,maybe someone can wirte me own storys about colobom.I think is intresting to read different cases about that. My baby she have in both eyes :( so im quite worried........
    my aadress is deisy.small27@gmail.com
    Have a nice day :))

    My daughter is 22. She has colomba of the right eye which we noticed at birth but never had a name for it. She has dark brown eyes so its not very noticable but people think it looks cool. She has astigmatism also and has been seeing a pediatric opthalomologist for years but we were never told there was a name for her condition. She drives well even at .night but does require sunglasses all the time whdn outside. Thanks for sharing your story

    Deisy,

    I tried that e-mail account, and it came back as not exsisting. Are you sure you typed in the address correctly?

    Fred.

    Hei :))) Ohh ..yep,i just chek ..its wrong,sorrys , small.deisy27@gmail.com :) All storys is welcome..

    There is now a surgery that covers your coloboma. Its called brightocular

    Dear Kimberly,

    Thank you for sharing your story, I used to have a young friend in Tae Kwon Do class who had the same condition. I was always afraid to ask her (or her parents) what was 'wrong' with her eyes because I was afraid I would offend her parents and upset her. I'm 32 now, and this was almost 15-16 years ago. I always wanted to know- does having coloboma of the iris affect your sight in any positive manner?

    Thank you and I hope that everything goes well with your son.

    -Andy

    Kimberly Crandell
    Andy, I have suspected that in darker conditions (once my eyes have adjusted) I may be able to distinguish things a little better than "normal" eyes because once again my pupils are larger and let in more light.  Similar to a cat that's eyes fully dilate in the dark so that they can see better - I assume my eyes may allow a little more light in as well.  However - I have no way to gauge this, and I would assume the difference would be pretty slight.  This is actually just an "educated guess" but it was a cool assumption to make to others when I was younger.
    Andy-

    Advantages to the condition? I can list two, and I do so with all good humor and certainly no disrespect intended at all to those among us who have vision difficulties that transcend any potential benefits. It is also difficult to explain how it is to be "different" when one has never been any other way since birth. "Different" is my "normal".

    First, As a kid I could always play baseball or football until it was nearly pitch dark, long after when my friends were begging to stop the game and go inside. I can also see uncommonly well in the dark, so long as there are not bright lights being shined at me. Driving on a two lane deserted road at dusk or near dark is heaven. I can see with clear and perfect detail what feels like for miles. These benefits are negated by the difficulty of playing baseball or driving in the bright sunshine, which causes me to squint my eyes nearly closed even while wearing the darkest sunglasses. I have lost more golf balls than I would ever want to count because I simply cannot follow their flight onto the fairway.

    Second, curiosity over my eyes and my willingness to ask if people were curious about me and wanted to know more has led me to meet many people and have a personal discussion about something that benefited both of us. And some people have told me that they find it attractive. We are taught from childhood not to stare and never to ask people questions that could make them feel uncomfortable. I know that when people notice, I should say something first and break the ice.

    I had this feeling corroborated after having a college friend who had lost an arm in an accident. He told me that the moment he thinks it is appropriate, he tells people he meets what happened (in his case, a work related accident) "How can I act like nothing is wrong and that nobody would notice?" he said to me one day. "The whole time I am trying to get to know somebody, and I realize that they are only half listening, while thinking to themselves, 'I wonder what happened to his arm?' People want to know, because they imagine this might happen to them. They want to know if it hurt and how you get along. So I offer first and tell them. It is better than having an elephant in the room, for goodness sakes".

    I have posted here before, but my Facebook page has a photo essay about what it was like for me to grow up with this condition, that for me is blessedly mostly cosmetic. Glad to have you visit there. And I really appreciate Kimberly writing this article and posting it here for all of us to read and comment.

    http://www.facebook.com/?ref=home#/album.php?aid=2043469&id=1000130806&r...

    Regards, Bill Henderson

    Andy,

    I know it is impossible to go back 16 years and ask that girl what was wrong with her eye. I never did mind if someone asked about my unique eye. I was happy to talk with them about my eye, and that it happens at birth very rarely.

    The only time I was bothered was in 5th and 6th grade. I guess that some of the kids can be mean if they want to in those years. As I grew older, the kids around me grew up and decided that teasing me was a bad idea.

    Fred.

    I am 24 and have coloboma in my left eye.I have hazel eyes. I am legally blind in my left eye.it is also slightly lazy and has astigmatism. i am sensitive to light and super senstive to any on-coming objects which i think is due to poor depth perception(my eyes just squeeze shut when anything passes by me quickly) the vision in my right eye is getting worse due to overcompensation, and gets tired fast and sore and results in a migraine. i have trouble driving due to the problem with sensitivity to passing objects,and keeping my eyes open... so i just stay off the road. other than that i have no problems. most people just think it looks cool and i have never been made fun of for it.

    Hi,

    You can teach your left eye to close and stay that way a few seconds at a time. I did. Mainly because I wanted to close my left eye if kids in school wanted to tease me. I guess you are lucky to never have been teased. I am not bothered by objects passing by me. Can't say I never had a migraine headache, but don't really know what they are, and have not had a headache in some time. That might have as much to do with diet as anything else.

    From what I hear, a headache from drinking to much can be solved by breathing in high levels of oxygen for a minute. So my guess is that lack of oxygen to the brain causes a headache? To much bloodflow into a your skull, to increase the oxygen levels back to normal? Have you ever smoked? Or been exposed to lead poising or carbon monoxide? These things can cause the blood to carry less oxygen, and might lead to headaches.

    Does anyone in your family have a history of diabetes? This can also lead to headaches and blindness - if untreated. Yet simple treatments can correct any damage that might have been done. Some pharmacies will give a free blood sugar test, go in early in the morning before eating anything, and get your fasting blood sugar level. If below 110, you are normal, if above 150 seek a doctor.

    Fred.

    i know a lot of things can cause headaches...i just get a bad headache right behind my left eye particularly when i read too long(20 mins or so) then my right eye shortly after the left gets sore and the headache then spreads to both sides

    I'm 16 with bilateral coloboma, but a bit different from yours. My right eye is 20:20 but with a slightly larger pupl and my left eye is about 4 cm smaller then a normal eye with and upside down keyhole shape and blind. From what I heared everyone at the hospital was a little freaked because they had never seen it before my parents to. I had surgery on cataracts a couple weeks after I was born and two more after that. Sunglasses are the best arent they!I've never really been teased about it, but theres aways that awkward moment when you look right in to a strangers eyes and they give you a funny look and look away at something else. And the infamous "whats wrong with your eye?" I've even had someone ask me if I was contagous. Oh the horrers of 4th graders. Though recently I got a color contact for my left eye and it helps. We defently gave my eye doc. a hard time trying to find a small enough one. Its always cool to find someone else with the same thing though I have yet to find some one offline. That would be the coolest thing ever. Just wanted to share my story and say this was really informative and thanks for sharing your story.

    Hi,

    I also have cat shaped eyes, my left pupil looks exactly like both of yours, the bottom of my right pupil isnt as wide at the bottom as my left. I've never met a person with my kind of eyes, and my eyes are also extremely sensitive to light.

    Very interesting to read all these stories! My one year old daughter has bilateral iris coloboma (very similar to yours) which I noticed a few hours after birth. It's in my husband's family so I knew what it was. She seems to see fine, but is very light sensitive as many of you have mentioned. I have been picturing endless teasing and tears in her future, so it has been nice to hear that many of you had mostly positive experiences growing up. So far MANY strangers and friends have asked about it and the most common response is "WOW! Cool eyes!" I know that how my husband and I act about it will be a major deciding factor in how she feels about it, so I am fully embracing the beautiful and unique eyes God gifted her with. I just wish I could get her to keep sunglasses on her head already! Thanks for sharing and providing a place to hear other's stories. It has been uplifting for me!

    I have had this problem for 23 years now and I've just dealt with it. Never researched it, until my wonderful fiance took it upon herself about an hour ago to see what my condition is called. We have been together now six years strong and we are getting married on 1/1/12! Every picture we've taken together I have always been behind sunglasses or my eyes are squinted shut! I am trying to find a solution so that I can be free of sunglasses for our wedding pictures. We searched and called several eye doctors this morning in hopes that there was some sort of "tinted contact lense." Come to find out that they did exist at one point, but are now discontinued. Right before she found this article we ordered "black out" sosmetic contact lenses. I already have very dark eyes and our theory was that the dark part of the contact would cover the extended portion of the pupil. Its a shot in the dark. I will try anything at this point. If anyone has any lead for a proper solution I would greatly appreciate it. It was awesome to read this article because I can relate to so many of your experiences. Thank you so much for sharing!

    Hello, I have a coloboma in my left eye. I did not realize it until a routine school exam when I was about 5 years old. I did not find out, until recently, when a doctor asked to take pictures of my eye. I do not have this keyhole shape, or anything interesting about my eye cosmetically. Rather, I discovered I have a coloboma on my optic nerve, so my central vision is wiped out. I also have 3 other ones that do not seem to affect my vision much, but this one on my optic nerve does completely. I have a hard time explaining this condition to others, as they can not "see" the coloboma that is commonly talked about (i.e. keyhole shape), rather I am just blind in my left eye. My right eye is getting weaker (just with age, I believe) and I get scared something will happen to my right eye. I get so tired of people not understanding that there is nothing I can do about this, there is no laser surgery and there is no visual (pardon the pun) to my particular coloboma. I am not sure if anyone in my family has ever had this, as some may have it and they may not have had their vision affected. I was not aware of the possible other congenital effects that may come along with this, I was never tested for these so that was definitely informative. Thanks for sharing, just wanted to share my story.

    To add to the last comment: I meant to say I discovered I had a coloboma at 5 years old, but did not discover until recently that it was on the optic nerve : )

    Just adding my two cents worth to this post. I was born in 1947 with bilateral colobomas and have been legally blind all along. My eyes are brown so it isn't as obvious that way..but i have nystagmus as well, so my eyes move in a pendular motion..which is definitely noticeable. I had cataracts in my 40's and I know someone else with coloboma who did as well. After surgery, my intraocular lenses moved out of place and I had to have a vitrectomy in each eye so the lenses could be sutured back in place. I have 2 children with normal vision and don't know of anyone else in my family who were afflicted with this problem. The geneticist i saw said my case is as bad as it gets...just wonderful. I was able to have a full life..i received a master's Degree in Counselor Education in 1980. I taught First Grade for two years and then worked to the State Vocational Rehab Department for 25 years..as a counselor and later as a Supervisor. My parents wanted to give me one of each of their eyes...but of course it's not possible to transplant an entire eye..just the cornea..which won't help this. Best wishes to all you kiindred spirits

    Reading everyone's comments, this seems to be more prevalent in boys. My son too has this, which was detected when he was born. He is now 5 and his vision seems to be fine. He passed his vision test at his 4 yr checkup. Recently he has been complaining of his eyes hurting, which made me start to research this subject again. I honestly believe it's related to his allergies, but I'm not sure.

    Leighla-

    He will be VERY sensitive to outdoor light, and this is probably why his eyes are hurting. I remember being a little boy and just having my eyes ACHE after playing outside. Between the over-stimulation from the sunlight and the squinting I had to do to keep the light out, it was very uncomfortable. I began to complain to my mother when I was about five, also noting that when I came inside I could not see inside for ten minutes until my eyes adjusted from the overload they had been subjected to. She had no idea what the problem was, went on with her ironing, and told me that "everyone feels this way and just get used to it."

    As an adult, I find certain kinds of indoor workplace lighting (incandescent track lighting especially) to give me terrific headaches. I go nowhere without sunglasses, though amazingly I never wore them until after I was 21. I just didn't know any better!

    The human body is wonderfully resilient, but don't underestimate the impact of having pupils that are stuck wide open at all times compared to normal eyes.

    My son is 7 years old with just his left eye effected by this over the past year he went from no glasses to now witglassees his vison is 20 30 I am getting worried with it not getting betterbut decreasing vision. As a mother should I be worried about him losing vision in that eye?

    Anonymous,
    I have been blind in my left eye since bith, and it is nothing to worry about. It either will or will not happen, and just learn to deal with it when it does.

    My only problem is I can not catch things, because I do not have depth preception. Something I have never had, and really don't need.

    My hope is that your son's vision does not contiue to decline. Has he been to a optamologist lately?

    Is there any history of diabetes in your family? A special exam is given to those who have diabetes. Sometimes it is the Optomitrist or Optamologist that discovers diabetes in some people.

    Fred.

    He was just at the eye doc. Today for a recheck bc he was complaining his glasses wasn't helping him. They r changing both lens now being his right eye is losing some small vision cld be stress on it doing all the work he is a very active lil boy and loves sports but I'm worried about putting him in football or anything to that effect. I have worked with blind and deaf children so its not that I'm scared dealing with it but its my son who I feel for. We r covering his right eye for 3 hrs a day to get the left eye working again but he hates it.. thanks

    Hi,
    I am fifteen hears old and I have coloboma in my left eye. Although it is not in the iris like yours (I have it in my optic nerve), I still get many comments. Because it is in the optic nerve it majorly affects my vision, so much that I don't use it at all and I rely on my right eye to see, even though I am near-sighted in that eye. Because I don't use it I usually give off the impression that I am not looking at someone, and so when I talk to people for the first time they usually look aroun before asking, "Are you talking to me?" It is probably the most annoying part about my condition.
    I see an eye doctor once a year at the hospital to get my eyes checked and to make sure that everything is still okay. When I was younger they had me wear patches over my right eye in hope to strengthen my left, which might have helped but I really don't know. I hated the patch...
    I currently wear glasses to correct the near-sightedness in my right eye, but nothing can be done for my left. When I was young it used to only go crooked when I was tired, but now it seems to be crooked all the time. I don't know whether it's because it's gotten worse, or maybe I'm just tired all the time now. lol.
    I found this article extremely interesting. I was never well informed about coloboma and never thought I was that unique. I had no idea that there were different types, or evevn the cause behind my problem. Thank you so much! ~S

    mine occurs in my left eye and is directly shaped like a cat my father and sister have it to im legally blind in my left eye to if i could post a picture i would it has held me back from doing a lot of stuff.

    Good afternoon to yall.
    I am very glad I found this website and I was able to understand more about my sons problem. He has it on both eyes, and everyone who actually takes a close look inside his eyes can see , other than that you can’t really tell. His vision is great other then when he goes outside is too bright for him sometimes and most of his pictures his eyes are almost close. He is only 5 and I have a daughter who is 4 and she don’t have it. at first I was kind of scare since I’ve never seen or heard of anyone whit coloboma. It makes me feel better now to know that so many people actually have it.
    Thank you all for sharing with me.

    Thank you so much for your story. Our son, 19 months, has bilateral coloboma. I noticed right at birth and he saw a specialist at 3 months. A friend of ours has a unilateral coloboma so we weren't too concerned. He has had glasses since 10 months bc they say his vision isn't terrible but isn't great and they were trying to prevent a lazy eye in one of his eyes. But it's so mild they expect him to grow out of it. He wears hats outside pretty much all the time. We were referred to a geneticist and she is running tests. She said there is a higher probability of genetic problems bc of the coloboma being in both eyes. My other son has a nevus sabaceous skin lesion on his head, which can also be hereditary. We feel our son is completely fine and has hit all his milestones either early or on time. But we are waiting test results and it will be a few months before we know anything. So, we've been pretty nervous. But your story (and so many of the comments) have really made me feel tons better! Thank you!

    Hello

    Im 29 and was born with 'coloboma no-optic disk' in my right eye and both my eyes are different colours. It was diagnosed a few weeks after my birth, where I was refered to Moorfield Eye Hospital. According to my parents it took several weeks to be offically diagnosed since none of the consultants havd ever seen it before. I have worn glasses since I was a baby, with a mixture of patches when I was growing up and I can still drive etc. Unfortunately I cannot say anymore since I have no futher info, I have been trying to locate somebody who may know more, but opticans are useless. So if there is any one out there who can shed any light on my condition it would be appreicated.

    Heya my name is chloe i am 13 and i have coloboma too i have to wear these shaded glasses when i go out side b cuz of the sun im blind in lift eye i cant see to the side or up at school i get cat eyes but i dont let it bother me b cuz i have had them for all my life an i wouldnt try to wear contacks soo people cant see them b cuz at the end of the day us people with coloboma are special! Xxx

    I love the way your eyes look. they look cool.

    ThaNks for sharing your story. It gave me some hope that my 7yr old nephew will be ok. He has bilateral coloboma. The gap almost went all the way through to the back of his eyes but didn't so he's not considered to be blind but was certainly on the borderline. I been feeling kinda bad especially because I thought that it was my fault because when my sister was pregnant with my nephew I remember arguing with her and I think she got stressed out. I heard that its not good for pregnant woman to get overly stressed because it may cause developmental defects on the fetus. I hope coloboma is hereditary and that its not my fault. I've shared this story to my sister via email. It's almost 6 am here in California but she'll get the email later today.

    My name is Kayla Philips, I am 17 years old and i have keyhole coloboma. My brother ,Kyle, and I were both born with it. Over the years i have been questioning why i have this. Although a lot of attention has came out of this i am not at all an attention seeker. My nickname is now cat eyes or kitty and my brother's is demon eyes. My eyes are different from my brothers because i have more of a greenish tint to them, its quite weird tho cause they tend to change to unusual colors such as grey/white or a goldish green color. While Kyle's on the other hand stays a crystal ocean blue. We both have it in both eyes but again it varies cause it affects my vision cause I am near sided and my brother has perfect 20/20 vision. I thought i should find other people with my condition to know I'm not alone with this weird yet beautiful defect.

    Thank you Kimberly for this post, Its nice reading other stories similar to my own. Bill and Fred I also really enjoyed your posts as well. I have bilateral coloboma of the iris and optic nerves, I am lagally blind, have nystagmus had cataracts removed about 10yrs ago.. Never really had too many issues with the sunlight, until the cataracts were removed, they appearently were protecting my eyes from the sun over the yrs. My dr. could only take a guestamit on my new lenes to be put back in, because of the optic nerve coloboma, they cannot get an acurate readoing of the eye. I have reading glasses as well to help with that, although still legally blind, it corrected my vision to a small degree. but what was my strong eye, became my weak eye, and from thet I now also have amblyopia in both eyes. they both just do they're own thing.. However I am just greatful that I have a wonderful life with my husband and wonderful children. I have familly that drive me places when I need things or catch a bus during the wk. when they're working.

    WOW i thought i was the only person who had this condition, i'm 16 and people have always been fascinated by my eyes i didnt even know that there was an actual condition name for this nor has any doctor told me why i was born like this, good to know there are other people out there who have the same condition as me and that they deal with the same issues that come with "coloboma"! Thank you for sharing your story, I have the EXACT same issues you do!

    I came across your story while researching the long term effects of iPad use with individuals who hove coloboma. I to have coloboma. I am 53 and have had it from birth. I wish I could say that it was easy to be a kid with this condition because for me it wasn't. I was teased endlessly which lead to low self esteem. They say that what doesn't kill you makes you strong and I would have to agree that having coloboma has made me the strong woman that I am today.
    I wanted to share with you and your readers how coloboma effected me in my 40's. In my early 40's my eyesight began to become extremely blurred and clouded. It started with just one eye but eventually lead to both. Having had coloboma since birth it was no big deal to be seen by the eye doctor often to evaluate the health of my eyes or any vision problems I was having. When the clouding and blurring began I went to my optometrist to see if perhaps I need a new prescription of glasses. This led to a referral to an ophthalmologist who eventually diagnosed me with cataracts. Now the interesting part of my story. It was necessary to have lens replacement surgery due to the cataracts. Because of the shape of my iris the chances for the new lens not shifting and not staying in place where high. In the end the doctor inserted an artificial intraocular lens and then sutured the deformed part of the pupil together. The result is that though I will always have coloboma my pupil now appears more normal. I have been pleased with the outcome. This surgery cannot be done as means of improving the appearance of the eye as cataracts must be present in order to have this procedure preformed. As a side note, I had a very difficult time the night before my surgery knowing that I would never have my "unique" eyes again. I took lots of picture of just my eyes for my children and grandchildren to see.

    Hi Lori, This website is truly fascinating. I also was born with a coloboma in my right eye with the "keyhole" appearance.My coloboma is large and goes from my iris all the way back to my retina. I was also born with a cataract in the same eye.
    I have been reading through the different comments here and found two comments (yours and another individual's comment) that was so much like my situation that I had to share it. How I would have been so grateful to have had someone to relate with when I was a kid! I also was teased endlessly, had low self esteem and even had a teacher once to openly joke ( in a negative way) about me in front of my whole class! I was so humiliated! To say I had a rough time growing up with my coloboma would be an extreme understatement. Dealing with the stress on a daily basis at school and on up to an adult life deeply affected me in many ways. I was constantly feeling like I had to avoid eye contact with anyone just to prevent humiliation. But fortunately, when I turned 40, I found a doctor who corrected my iris by surgery. After many years and having several doctors to tell me there was no surgery that could be done to make my iris look round, the technique was finally developed! My "keyhole" shaped pupil was closed and now looks normal. I am very pleased with mine too.
    There is so much that I could say, but there isn't enough room to share it here. It is just an awesome feeling to be able to share similar experiences with others who really know what it is like! I felt so lonely growing up and felt like I was the only one in the whole world with my condition. I use to wonder if there was anyone else like me and wished I could have met someone to relate with. I simply felt so different and abnormal. As for my vision, I have the intraocular lens and I do have reading glasses too. My vision in my right eye will never be perfect even with glasses, but I am blessed to have had it in only one eye and the other eye is normal. My comment here isn't to pity myself at all, but only to share my story to hopefully help someone else know that they are not alone. My experience has helped me over the years to be very sensitive to other individuals' feelings and has made me a stronger person. I am just very grateful that I found this site that relates to me as well. Thank you for listening and I apologize for such a lengthy comment. It is just so wonderful to be able to discuss something I have in common with others. ........Karen

    Karen, thanks for sharing your "Coloboma" story. Wow, our stories really do have a lot of similarities. I'm glad that your surgery turned out well. I think that it would be much more difficult to have a "normal" shaped pupil and one with coloboma. I think that alone would have driven me to seek surgery to correct the deformity just to gain some sort of symmetry. I'm not one to believe much in horoscopes or signs but I'm a Libra and I am very sensitive to balance and symmetry. Fortunately mine are pointed in the same direction. I have seen cases where the part of the pupil that drops down in each eye are different. This just seems to add to the uniqueness of coloboma.
    Thanks again for sharing your story.
    Lori

    Karen, thanks for sharing your "Coloboma" story. Wow, our stories really do have a lot of similarities. I'm glad that your surgery turned out well. I think that it would be much more difficult to have a "normal" shaped pupil and one with coloboma. I think that alone would have driven me to seek surgery to correct the deformity just to gain some sort of symmetry. I'm not one to believe much in horoscopes or signs but I'm a Libra and I am very sensitive to balance and symmetry. Fortunately mine are pointed in the same direction. I have seen cases where the part of the pupil that drops down in each eye are different. This just seems to add to the uniqueness of coloboma.
    Thanks again for sharing your story.
    Lori

    Hi,
    I am 24 years old and was diagnosed with coloboma when I was an infant. I do have vision deficits due to it, but I live a pretty normal life. Along with my coloboma (bilateral) I also had detached retinas that had to be surgically fixed when I was a baby. My right eye is my "bad eye", I am legally blind in this eye, however my left eye the vision is ok, not the best, but good enough to where I can drive. My eyes are very dark brown so people don't ever notice it. I work as a paramedic so I do get co-workers who like to look into my eyes just to see what they look like. I definitely have sensitivity to light, people always asked me why I drive with my car visor down even at night :). The only problems I had as a child, and still sometimes struggle with today is sometimes, especially when I am tired I get a "lazy eye". I had surgery when I was an infant to correct the muscles to straighten out the eye as much as they could, and it helped out A LOT. But, it was always a self-esteem issue when I was younger. Now it does not really bother me especially since I work in the medical field. I just went for a check up today and found out I am starting to develop cataracts in both eyes, this scared me. I just kept thinking I'm only 24 how do I have cataracts. But after talking with the dr she said it is quite normal at a young age with coloboma to develop them, and that in about 20 more years I might have to do something about them. I can live with that. It is very nice to be able to talk with people who "suffer" from the same condition!! Thanks to everyone for sharing their story. If anyone has information about coloboma and cataracts that would be awesome!!!!

    Hi,
    Thank you all for sharing your stories, it has been very informative reading through these posts. Our daughter was born 3 weeks ago and we have recently noticed she has a coloboma in her left iris. It has been confirmed by a paediatrician, but we are currently waiting to have her seen by a paediatric ophthalmologist to have a full eye examination to determine the extent of the coloboma (wait will be 2-3 weeks). Needless to say we are both quite anxious to get some answers to our questions....so I thought I'd ask whether anyone has received advice on the following:
    - Relative to the size of the iris, does the coloboma typically stay the same size from birth, enlarge or reduce as a child gets older and the eye grows? Hers looks quite large compared to photos i've seen.

    - Is there a correlation between the red-orange reflex test and vision impairment in people with colobomas? Her ROR test was positive, which we're taking as a good sign, but unsure whether this has any real bearing on the likelihood of vision impairment.

    Obviously every case is different and we just need to wait for an examination by a specialist to get accurate advice.

    Sam

    Sam,
    I am 22 and was born with a quite large coloboma in the iris of my right eye. My retina is partially affected, and very like to some day detach, in which case all i have done to prevent this is avoid contact sports my whole life. ..

    As far as vision loss goes, I am legally blind in my right eye. i can only see a blur of colors and only directly in front of me when i use only that eye. I have learned to live with this and my left eye over compeensates for thee bad one....as far as I know, my vision with both eyes open is fine minus some peripheral on the right. I have a drivers liscence with only 1 restriction saying i have to have all mirrors......

    for coloboma progression...mine has never changed size....i dont think it can get smaller or larger unless in happens to be degenerative (if that even exists. ) chances are the only way it will ever get worse is from other complications..such as detached retina, cataracts, and glaucoma.

    hope this helps ease your mind a little bit.....good luck!

    Kimberly, your eyes are gorgeous.

    My youngest son has blue eyes, and a unilateral coloboma (Left). He wears glasses, and has since the age of 4 (He's now 13). It doesn't seem to bother him much, unless we're skiing, although now he has dark goggles for when we hit the snow. Marc's colaboma shape looks exactly the same as yours, right down to size and position. I've never seen anyone else face-to-face with a coloboma.

    Hello. You (and many others commenting) are lucky w/ your (their) coloboma. Your eyes look nice and symmetrical, and neither eye turns in from being blind from the coloboma. I also like the diversity, though many coloboma people do not have such nice symmetry.

    I have coloboma in both eyes w/ pupils like yours, but one of my eyes is blind and its iris is smaller than the other eye, as is the aperture/opening of the eyelids. The blind eye also turns in due to blindness, and so I have heard laughs or comments about being cross-eyed from childhood through adulthood (as an adult, mostly from children in my work, family, etc., though also from young and old adults I've received the laughs and comments...comments that aren't asked in a kind way as you have received). I have a lot of pain from light and from having one eye do all of the work. My eye gets blurry sight-wise for hours and is useless if it gets too much light w/in 24 hr periods, and w/ that comes additional pain.

    For those kids who experience what I have/do, wear sunglasses as much as possible, indoors too, to avoid the pain from light sensitivity, but also to avoid the mean comments, laughs, and looks from people.

    Hi my daughter is 11 and has unilateral coloboma of the right eye unfortunatly here goes back to include the optic nerve
    Along with nystagmus, detatched retina, glaucoma, and she recently had surgery to correct a squint in that eye also Phew! But she is fantastic at karate and represented England in April 2011 against Ireland bringing home 2 bronze medals, so never say never people! Even though somedays she's in pain from the glaucoma, she continues to amaze us everyday oh yeah and she's just learnt how to thread a needle something that was driving her mad lol I think I have 1 very determined young lady ;)

    Thank you so much for sharing your story. when my daughter was 3 months old we noticed that her eye was different for the first time. We were outside and her pupil was so much larger than her other one that it scared us. Once we made it to the doctor we found out that she had coloboma. It is only noticable in one of her eyes, but the doctor said that it is in both of her eyes. She also has to wear glasses and astigmatism in both eyes. Like you, her case was hereditary; one of my uncles had it also. When she was first diagnosed with it, the doc said that it would impare her peripheral vision. The way that he explained it to us was it would be like she was wearing a hat and wouldn't be able to see anything above the visor without moving her head up to see. I was curious if you or anyone else reading this has that type of vision problem. I figured if this was the case it wouldn't be a big deal for her because she really wouldn't know that she was missing out on anything. I do worry about her sometimes because people always make comments about her eyes. Most of the time they say something like, "wow you have the coolest eyes." But you know how mother's are and we don't want our children to get picked on, especially for something they have no control over.

    Thank you so much for sharing your story. when my daughter was 3 months old we noticed that her eye was different for the first time. We were outside and her pupil was so much larger than her other one that it scared us. Once we made it to the doctor we found out that she had coloboma. It is only noticable in one of her eyes, but the doctor said that it is in both of her eyes. She also has to wear glasses and astigmatism in both eyes. Like you, her case was hereditary; one of my uncles had it also. When she was first diagnosed with it, the doc said that it would impare her peripheral vision. The way that he explained it to us was it would be like she was wearing a hat and wouldn't be able to see anything above the visor without moving her head up to see. I was curious if you or anyone else reading this has that type of vision problem. I figured if this was the case it wouldn't be a big deal for her because she really wouldn't know that she was missing out on anything. I do worry about her sometimes because people always make comments about her eyes. Most of the time they say something like, "wow you have the coolest eyes." But you know how mother's are and we don't want our children to get picked on, especially for something they have no control over.

    Thank you so much for sharing your story. when my daughter was 3 months old we noticed that her eye was different for the first time. We were outside and her pupil was so much larger than her other one that it scared us. Once we made it to the doctor we found out that she had coloboma. It is only noticable in one of her eyes, but the doctor said that it is in both of her eyes. She also has to wear glasses and astigmatism in both eyes. Like you, her case was hereditary; one of my uncles had it also. When she was first diagnosed with it, the doc said that it would impare her peripheral vision. The way that he explained it to us was it would be like she was wearing a hat and wouldn't be able to see anything above the visor without moving her head up to see. I was curious if you or anyone else reading this has that type of vision problem. I figured if this was the case it wouldn't be a big deal for her because she really wouldn't know that she was missing out on anything. I do worry about her sometimes because people always make comments about her eyes. Most of the time they say something like, "wow you have the coolest eyes." But you know how mother's are and we don't want our children to get picked on, especially for something they have no control over.

    hi

    hi ı live in turkey ı have got a babe he is so pretty when he is only ten days ı decided his eyes so different . immeditaly ı wen a doctor doctor said he has got colobomo in his two eyes iris and choroid then ı was so sad about this ı only prayed my got ... our family dont have got this ilness ı think colobom is not genetic .
    ı only ask a doctor with wery panic and with cryyy:(((((((
    is he never see my face:((((
    doctor says nooo he can see but he cant has got a good vision
    ı said a doctor he will read a book or drive a car
    doctors dont answer this questions
    now he is 5 months .. he can see my face and laught me but ı dont know his vision yet
    please ı want to meet this people
    ı m sorry for my bad english ...

    I have Coloboma in my right eye only and I only have the key shaped pupil. I have truggled with this my whole life. It has been very embarassing my whole lofe to be asked, "What's wrong with your eye?" And you know when someone is fixing to ask you too, they get this certain look about them and then out comes the dreaded question...then you have to explain what Coloboma is because NO one knows about it. I have felt like an outcast my whole life because of it. However, I knew I found the love of my life when I meet my husband, because we dated, married, had children and he has never once asked me about my eye. One day I just brought it up (after we were married) we were at the doctors appt. a routine check-up when I was pregnant with our first child and the doctor asked me what was wrong with my eye, I told the docotr then when he left the room I had to clam my husband down because he did not appreciate the doctor asking what was wrong with my eye, I then explained it to my husband for the first time :) My Coloboma is heredity I do believe because my great aunt had it then it skipped a generation and I have it....who knows.

    Hello (Anonymos), my name is Karen. I was reading these comments and yours and another one is so much like what I have experienced that I would like to share my thoughts about it with you. I also have a coloboma in my right eye. It is a large one and begins in my iris and goes all the way back to my retina. I had the "keyhole" shaped pupil until a few years ago when I found a doctor that did surgery, and sutured my iris and made it an almost perfect round. For so many years I wished that there was some kind of surgery to help me. I went to different doctors only to be told that no surgery could be done due to the delicate tissue of the iris. Finally, when I was 40, I found a doctor who was able to help me and my iris was sutured. I still have the coloboma that extends back to my retina and my vision will never be perfect, even with glasses (my peripheral vision is not good in that eye) for example, if I am told during an eye exam to look at a square box in an eye machine, I can't see the upper right corner of the square and my field of vision on all sides is less. I also had a cataract (born with it) in that same eye removed during the surgery. It didn't improve my vision, but it would have been worse eventually had I not had it removed. But what caught my attention about your comment was your experience and how it made you feel. I also struggled with my coloboma my whole life and like you, I was also so embarrassed when someone would make a comment to me. I know exactly what you mean by that certain look an individual would get on their face right before asking the "dreaded question." I know what it means to feel like an outcast. At times, I felt so abnormal that I didn't feel like I even belonged on the planet earth! I always hated going to the eye doctor because I had some that I felt made a spectacle out of me because they wanted the employees to come see my eye, It made me feel like I was so abnormal. I look back at those experiences and I'm sure they meant no harm, but I still think it was a liitle insensitive to do someone like that. There is no one in my family that has a coloboma, at least none that I am aware of. I always felt so alone with my condition and unattractive. I just wanted people to see me as a person with feelings, but instead, it was like all they could do was focus on my eye. When I was in the 5th grade I got reading glasses, which became my security blanket because I felt like it helped to hide my eye a little bit. When I was in high school, a girl yelled out in front of everyone during class changing time as I was passing by other students and yelled out "We want to see your eye!" When I got to my class, that same girl blabbed it out again in front of everyone and some of the students started coming up to me in class wanting to look at my eye. I finally snapped at them and said something like "I don't know why everyone is making such a big deal about it!" They quickly had a shock look on their faces because I don't think they were expecting " timid little me" to respond like that, (LOL) ... but at least they left me alone. I really think it was just out of curiosity, but at the time, I felt like I was being treated as if I were some kind of freak in their eyes and laughed at. Another time, I had a teacher that made a joking, negative remark about my eye in front of the whole class and I was extremely humiliated. This is just a few of the many, many experiences of humiliation I went through. I am sure you know exactly what I mean. You probably could share many just like that as well. I don't mean to go on and on about my life history, but I hope that by sharing my story that it will help someone else to know that they are not alone. It has made me a stronger person and I think that because of it, I am more sensitive to others and what they may be experiencing in their lives. Thank you for sharing your story. It is so much like mine! ...........Karen

    I just found out that my younger daughter (born 12/2/11) has a coloboma in her left eye. Neither my husband nor I know of anyone in our families that had one, so I think it's probably just a "fluke" if you will. I'm very glad to hear that it's possible or even likely that she will have no serious problems related to it. I feel badly at how sensitive to light she'll probably be, since I am very sensitive to light as well.

    Our pediatrician told us that we should see the eyey doctor fairly soon, but doesn't think it should cause a lot of problems. She told us that her daughter has a preschool classmate with bilateral coloboma. We're in Colorado, so maybe that has something to do with it? :-D

    Thank you for sharing your story, and for all the comments from others. It's very encouraging. :-)

    iris and choroid of both eyes of my son, 6-month coloboma optic nerves affected by the current. I first heard about the accused's a shame I was pregnant, she said, I cried for days because now my son objects toparlandım track and smiling at me. Well how is the future see a doctor but I can not see clearly the extent to which the life of the school that he said he sees the effects at the normal read this topic with me yazabilirmi paylaşırmısınız mails bihayli comforted me. key-hole shaped brown eyes of my son, but not very specific.

    My 3 year old son has coloboma eyes that look exactly like yours. It blew my mind when I noticed, about a week after he was born. I always wondered if he saw things differently than everybody else. I can tell that he has amazing night vision, but he is always squinting when we are out during the day.

    I am 20 years old. I was born with bilateral coloboma and unfortunately it was not only my irises that were effected. The gap goes all the way back to my retina which limits how far I can see. I also have only my lower peripherals which leaves a big blind spot in my vision. I also have nystagmus (involuntary eye movement) and it makes it difficult to look people in the eyes. Unfortunately other parts of my body were affected as well. I have a cleft lip and palate and clubbed feet. It's honestly such a relief to know I am not the only person out there with coloboma. Though my case is one of the more severe ones, knowing others have this and are able to live with it gives me hope to be able to hold my head up high one day. Thank you.

    hHi Daniel, I'm having turkey when I go to a doctor sees, but can handle itself said that at least now I DDI sees something wrong you did not understand what I wanted to ask you that you're gone Life! the extent to which affected the normal school. six months of my son, not yet ...If you can not see small objects away from vizyonamı got a blurry. What was life or school. I am impressed by the new birth, and I did have my son in nystagmus What can I do for my baby that I watch tv read the book. Thank you very sevineceğim if i VSSS

    daniell please give me yor facebook ı wanted to add you if you let

    DANİEL PEKİ BU DURUM SENİN OKUL HAYATINI HANGİ YÖNDEN ETKİLEDİ . yani araba kullanmanı vs kitap okumanı falan

    DANİEL PEKİ BU DURUM SENİN OKUL HAYATINI HANGİ YÖNDEN ETKİLEDİ . yani araba kullanmanı vs kitap okumanı falan

    THIS SO YOUR SCHOOL LIFE Aniel which stars from which direction. Please read through the book from the car or something you used, etc

    Hi Kimberly,

    I randomly stumbled upon your blog/article today and couldn't help but comment myself. I actually have a unilateral coloboma in my right eye with quite a bit of vision loss since the vessels in the back of my eye didn't develop properly when I was in my mother's womb. I'm 20 years old and attend college like any other normal person, drive, sleep, talk, etc. but the only difference is that I'm legally half blind. I'm glad to hear that your condition is mild, but for those who have a severe case it's not so bad either! Surprisingly, I've never had any vision problems regarding light intensity, but i do have a problem in perception. I can't tell if something is near me or far away at times.

    But my biggest fear (which you've made a little less frightful) is having kids when I'm older. I'm afraid that they'll be born with my condition, but after reading your article and hearing about your own three, healthy children my fears have lessened. Thanks for sharing your story!

    Hi Kimberly ... you have a mild form as do I but mine is much more milder then yours ... my pupils are oblong just like a cats but doesn't get as thin in the light .. I am the baby of 13 kids and I am the only one that has the defect ... I am 41 now ... and 8 yrs ago I had a grand mal so my pupils are more kidney shape now :( next one could blow the pupil as told to me by an emerg. doctor who in her career my eyes had been the first she had seen ... but thank you for the story and article ... :) also since the seizure I am now color blind to certain colors .. it is frustrating because I want to see the colors but I just can't ....

    i found out about my lil girl she 3 years old nw but found out she had coloboma wn she had her 8 weeks check im glad there people who i can talkm to about it but got6 told they aint going be much change in her sight

    i found out about my lil girl she 3 years old nw but found out she had coloboma wn she had her 8 weeks check im glad there people who i can talkm to about it but got6 told they aint going be much change in her sight

    papillae choroid coloboma iris coloboma defect for my son and said, I am worried about her vision is good or bad your comment will go to the vision for the better thanks

    i found out about my lil girl she 3 years old nw but found out she had coloboma wn she had her 8 weeks check im glad there people who i can talkm to about it but got6 told they aint going be much change in her sight

    sonia turn my English is not very good, but still many do not understand your yodumunu google translation you can make it a little more information thank u

    For 22 years I referred to my coloboma as a "birth mark" It wasn't until I attended a medical early intervention convention for work that I found out what it really is. I also count myself lucky that it is purely cosmetic, and obviously not even serious enough for my Ophthalmologist to mention anything about it besides it being a trait often connected to Acadian (Cajun) heritage.

    i have colobomas. its a weird story that i can't really figure out. maybe someone could help explain it. after my mom had my three older brothers she pulled a plug out of the wall and it slammed into her eye. She had to get surgery on it and after the surgery she had what appears to be a coloboma. A little more lop sided than mine. mine both being perfectly semetrical. When she had me i had two colobomas. I have good vision more the most part, besides the fact that they are sensitive to light. I just wondering how an accident like that could be hereditary, Is this possible. What are the chances of that.

    i have colobomas. its a weird story that i can't really figure out. maybe someone could help explain it. after my mom had my three older brothers she pulled a plug out of the wall and it slammed into her eye. She had to get surgery on it and after the surgery she had what appears to be a coloboma. A little more lop sided than mine. mine both being perfectly semetrical. When she had me i had two colobomas. I have good vision more the most part, besides the fact that they are sensitive to light. I just wondering how an accident like that could be hereditary, Is this possible. What are the chances of that.

    i have colobomas. its a weird story that i can't really figure out. maybe someone could help explain it. after my mom had my three older brothers she pulled a plug out of the wall and it slammed into her eye. She had to get surgery on it and after the surgery she had what appears to be a coloboma. A little more lop sided than mine. mine both being perfectly semetrical. When she had me i had two colobomas. I have good vision more the most part, besides the fact that they are sensitive to light. I just wondering how an accident like that could be hereditary, Is this possible. What are the chances of that.

    i have colobomas. its a weird story that i can't really figure out. maybe someone could help explain it. after my mom had my three older brothers she pulled a plug out of the wall and it slammed into her eye. She had to get surgery on it and after the surgery she had what appears to be a coloboma. A little more lop sided than mine. mine both being perfectly semetrical. When she had me i had two colobomas. I have good vision for the most part, besides the fact that they are sensitive to light. I just wondering how an accident like that could be hereditary, Is this possible. What are the chances of that.

    i have colobomas. its a weird story that i can't really figure out. maybe someone could help explain it. after my mom had my three older brothers she pulled a plug out of the wall and it slammed into her eye. She had to get surgery on it and after the surgery she had what appears to be a coloboma. A little more lop sided than mine. mine both being perfectly semetrical. When she had me i had two colobomas. I have good vision for the most part, besides the fact that they are sensitive to light. I just wondering how an accident like that could be hereditary, Is this possible. What are the chances of that.

    after reading some more posts i heard someone talk about also being born with clubbed feet. my legged were both crocked when i was born. luckily they put casts on my legs to correct it when i was a newborn. Is this also a common trait that comes with colobomas? I didn't look into this until recently for some reason. Im 23

    Hi friends, my son was 8 months old now directly make me laugh to see. thank god for that. I wonder how you'll see her in the future. I'm happy to see me laugh, but that is still very intense feelings. What is what is called. man .. you know how lucky we all actually vazgeçebilmesi everything. tried to do the small things, small things that have spent our time. always acabalar? happy days full of all of us wish all the time from Turkey

    Hi , im 13 and i have coloboma , i was just wondering if anyone knew of a support group of anyone i could have a chat with that has colobma and compare experiences and just for a chat?

    Hi Kimberly,

    I don't have any eye problems now but was struck in the eye with a rock as a toddler which required surgery to re-centre the eye again. I have instead unilateral microtia and aural atresia. I have very blue eyes and I'm somewhat averse to bright lights so much prefer to wear a baseball cap when I can. I think your eyes look great. I must say that you write very welI. I'm much impressed indeed. We have an area here in the northwest of Western Australia that's known as "The Kimberleys" and it has a big diamond mine but I don't think that any diamond could ever be made to look better that your eyes.They're so special. I wonder if you've ever read the great English poet John Milton's poem called: "On His Blindness"? He wrote it after he lost his sense of sight but methinks that he was well-able to ever see and proclaim that which is evident. The last line of his sonnet says it all for me. If you Google: "They also serve who only stand and wait www.englishclub.com" you'll find its import. Take care of those eyes won't you?...they're just flawless forever!

    My daughter eye are just like yours.She gets alot of people want to know where she got her contacts lol.

    My daughter eye are just like yours.She gets alot of people want to know where she got her contacts lol.

    My daughter eye are just like yours.She gets alot of people want to know where she got her contacts lol.

    I'm 18 and I have bilateral coloboma. I have a worse condition then you though. My right eye looks almost similar to yours (even though my eyes are light blue haha) but my left eye is much smaller and i'm actually surprised I have any vision at all. I can barely see through it and it sucks. I have yet to find someone with the same eyes as me! i'm actually really jealous that you have!
    I'm also looking (and hoping) that there will be some form of stem cell research that could hopefully cure my blindness and the look of my eyes. Because of coloboma I just have a bunch of problems with them. I'm really glad I don't have the other problems though. Some day i'd like to be able to see properly and look normal. It is honestly a huge pain in the butt to wear contacts all the time for cosmetic and sight reasons. Although, I really don't have a problem with light at all!

    Well I'm going to ask you something hi haley and others how your life was learning to read, I went to a doctor that said board, for example you can see the first two places is closely watching television or visual field loss in detail or you can see yourself, your job is not actually legally blind sayılsada now my little boy according to doctors worried about her 9-month biletaral koloboma also affected choroid and optic nerves, but still does not open my eyes at close distances, seeing the sunny days, although still very good to see how she saw me, and laughter took at least it still thank God you

    hi my name is john i'm 51 scottish i to have a coloboma left eye only. its never bothered me cosmetically i got used to the nasty comments as a child which i paid no heed too i love to see the reaction on friends faces whom i have known many years when they suddenly realise my eyes different to theirs so funny hahaha i do suffer from light sensitivity but as i have worked nights for the last 30 years it hasnt been an issue and when i'm on vacation or riding motorcycle its dark visors/sunglasses, sight impairment is minimum i kinda like being slightly different ..... :)

    Hi,
    I have a 7 year old daughter that has bilateral coloboma. I noticed her eyes the first time I held her. (not genetic) I remember telling my nurse it looks like her eyes were upside down tear drops. They smiled, said, "hhmm, weird," and left it at that. When I took her to her Ped doc he said that she should be fine (evidently not knowing what her condition was) and said to have her vision checked at school age. Well, after 2 1/2 years of unanswered questions from her doc, I decided to change doctors. Again, her new doctor never said anything about having her vision checked. (Small town physicians with little to no experience with different diseases) So, I took it upon myself to call an opthmalogist. I admit, I procrastinated thinking it would be an out of pocket expense, however to my surprise it was covered under our insurance. I kick myself and feel like a horrible mother because I procrastinated so long.
    By the time my daughter was 3 I had finally gotten her to the eye doc. He said he was happy I brought her because if I had waited til she was school age her problems wouldn't have been able to be corrected. I found out not only does she have bilateral coloboma but also an astigmatism in both eyes as well. When she first got glasses her vision with corrective lenses was 20/60, however today at her exam she is now seeing 20/25, so I am extremely happy with her progress! Her astigmatism has gotten worse and is at a 4.50+ which, according to the doc, is high for an adult let alone a child her age. So, off to get new glasses for my little girl.
    Her coloboma is the almost unnoticeable due to her dark brown eyes so no worry of being made fun of.
    Due to her coloboma she usually has no difficulty with her vision. She does however, have blind spots in her upper peripheral vision that she doesn't seem to notice. I suppose she will once she is older and is able to understand a bit more. The MD also told me today that she is at a higher risk for retina detachment and even higher if she plays sports. So, I learned today that no contact sports are permitted for her. I am putting her in gymnastics (She is quite active and loves outdoors) so I suppose this is our compromise to sports. I wasn't aware of the risks of getting hit in the face until today due to the risks. I suppose it frightened me a great deal since I started googling the disease which is how I found this wonderful site- (I did initially but never seen how important the risks are-especially with the detachment)
    I'm not sure why I felt compelled to post except for the fact that it scared me that after 7 years I didn't know the high risk of retinal detachment with this disease. I will certainly be more aware of the signs/symptoms from this day forward.
    Thanks for the site! I am glad I found it!!!

    Oh, one last thing....my daughter has extreme sensitivty to light as well. We are boaters so in the summer its shades and hats or she gets headaches!

    Hi my son will be 3 months old soon and I first noticed his when he was about 3 weeks old. He has bilateral and the doctor said today that neither surgery nor glasses would help. As of now it is a waiting game to see if he will be able t see or not. He is also a twin and my daughter his sister is perfectly fine. I'm glad too find more people with the same thing.!!!!!

    Hello, baby, now 10 months old baby to the sun were out yesterday, a day never bakamadı güneşlisbir eyes half closed position. but it still feels pretty good night vision could see the people around him. symptoms of mild head right now, this is amblyopia head to wonder if this has kontrlü in August. realizes as people shift their eyes only. Let's look will be like

    Good on you Shannon! It's easy to see[no pun] that, whilst there's always the risk of retinal detachment, inter alia, there's no worry at all about your daughter having any risk of maternal detachment. I too had a very dedicated mother and I salute you. In regards to teardrops, the real ones that is, and I know I've shed a few in my time, I'd just like to say that anyone who ever worries about crying, or having teardrop-shaped eyes[coloboma], there's no need to. Although I don't have coloboma, I now like to think that: "Perhaps my tears are the prism that I need to find the rainbow that is me!"

    Good on you Shannon! It's easy to see[no pun] that, whilst there's always the risk of retinal detachment, inter alia, there's no worry at all about your daughter having any risk of maternal detachment. I too had a very dedicated mother and I salute you. In regards to teardrops, the real ones that is, and I know I've shed a few in my time, I'd just like to say that anyone who ever worries about crying, or having teardrop-shaped eyes[coloboma], there's no need to. Although I don't have coloboma, I now like to think that: "Perhaps my tears are the prism that I need to find the rainbow that is me!"

    I really loved reading this. i have coloboma in my right eye and for the most part it doesn't hold me back. The vision in my right eye (the one with coloboma) is pretty bad. if anything happens to my left eye id be legally blind. The eye doctors tell me i should wear a cosmetic contact to help cover the excess pupil area and then glasses over that. if i had one wish i wouldnt get rid of my coloboma but i would like to have the option of wearing normal contact lenses instead of glasses. I am also very sensitive to light. Im trying to learn to drive but i can only go out at certain times because i do not have prescription sunglasses. I never really notice my eye but there are times when im talking to someone (could be a stranger or a longtime friend) and all of a sudden theyll just stare at me, and i think to myself here we go again. As far as i know there is no one else in my family with coloboma, making me the first......until last year when my little brother was born with it. His is in his left eye. The interesting thing about my brother and i is....well hard to explain. i was born and then my parents split up. starting new families and giving me half siblings on both sides. after 17 years my parents got back together and gave me my first full blooded sibling....and boy with coloboma. the fact that the produce two kids with coloboma was..impressive.

    I really enjoyed reading this. I have a 1month old baby girl that seems to have a coloboma -- formal diagnosis to come soon. I'm pretty upset about it, the unknown (how, what is the formal problem, what structures are missing, how wil lvision be, is it charge?). Very much hoping her case is like yours. We'll see. I'm in the western suburbs of Philly -- anyone have a good pediatric eye doc to recommend? I have read some comments that some eye docs are unaware of this condition. And, I have noticed several support groups online -- does one stand out?

    hi my name melissa i also have coloboma i live in australia but my eyes are very different i have one blue eye normal and my green eye has coloboma i never knew what i ahd was called to i found this site iam now 29 ive meet 3 ppl in my whole life with it my mum doctor told her i was born with it duer to her working on a farm while 7 months pregnant i was scared that i was curesed with this but i now know there are more ppl like me i my condition it bad iam partly blind iam ment to wear glasses to read and drive but since i know wearing them has not helped my condition i only wear them now and then i wear sunglasses all the time i cant watch small tv as they give me migranies every day i have 6 kids and none have coloboma and thanks to reading your story i nowe under stand what i have thank you so much

    Hi Melissa! I read your post very carefully, c'OZ' that's my muse, and saw that you have a mum who was for some time attached to farming in Australia, like my mum was, in her formative years. After reading your story, I just wish to let you know -- without trying to promote anything even approaching that which could be even be loosely construed as being jingoistic [yes, my tongue is firmly implanted in one of my cheeks] -- that your story about your coloboma and the fact that you're still only 29 years old with 6 children makes me so proud to be Australian, and with Kimberly's wonderful web page ever on-song capping all of this off, in getting the message through to the masses about those so-afflicted with coloboma --- and the many souls that care about them -- in its visualised-variabilities, things in life can only get better from here on in without even a shadow of a doubt. Thank you Melissa!

    Hi,
    I have a 2 year old son who was born with several impairments including hydrocephalus (fluid on the brain), a hearing impairment (he wears hearing aids), a coloboma in one eye and microphthalmia in the other eye.His right eye is the one with the microphthalmia which means it is abnormally small. His is really cloudy and bluish kinda like a cataract and doesnt have a pupil. He is blind in that eye and only has light perception. The left eye is the one with the coloboma and also severly near-sighted making him legally blind. His coloboma is at 6 and 9 on a clock and i think his is only iris. He puts books and things up really close to his face to see and I have noticed that he squints constantly when its bright, especially when he goes outside. He wears prescription eye glases but we are currently trying to get him some prescription sunglasses to.I am glad that i read your story because now i know there are other people that have the same thing as him so maybe he will find comfort in that when he gets older and be able to share his experience to. It also helps me when i read stories like yours because i can get a little insight .Your story is also helpful because i never though of getting a headache from it being so bright and that would explain some behavior issues we have sometimes. I am glad to hear that you wasnt teased. It breaks my heart knowing that he may be teased and have others stare at him, I dont understand why people have to be so mean. It also breaks my heart that he has to go through life with these disabilities that makes everyday activities hard for him. Thank you for your story!

    I keep getting email notifications [about 5 in all now, 4 were in succession on the same day] that there are new comments about Coloboma but none are actually featuring. Somone needs to check out what is causing this subterfuge. Maybe someone is just trying to raise some revenue.