Case study: Patient Ashley has Hermansky-Pudlak Syndrome, a rare genetic disorder characterized by albinism, vision impairment, and bleeding disorders such as chronic hemorrhages. H-PS is particularly damaging to the lungs.

Location: "Children's Gala" auction for the Children's Inn at National Institute for Health (NIH)

Situation: Subject is singing.

Analysis: Measuring the baseline and improvement in the subject's singing is a valid diagnostic tool for tracking improvement of lung capacity.


I'm at the Children's Gala, overbidding on a shawl and enjoying tasty food courtesy of our table hosts, QuarterLine Consulting and Scott-Long Construction, when I hear the above story.  Music to soothe one's spirit, everyone knows of.  Music as therapy, there's been a few cases.  A quick web search on 'pulmonary fibrosis'  turned up (at Knol) that "attention to symptom management is beneficial in all cases. The most disabling symptoms are shortness of breath and cough. Shortness of breath may respond to techniques such as the use of a fan to blow air on patients’ faces, music therapy, and relaxation techniques."

What this patient related was a new thing, though-- music as a measurement of patient physical capacity.  Her doctor would listen to her singing to track improvements or losses in lung capacity.

Having recently had my lung capacity roughly assessed due to a bout with pneumonia, I understand how difficult it is to get a true assessment of full capacity.  Beyond a simple measure of total breathing capacity, isolating each lung often requires X-rays, and assessing long-term trending requires constant measurements (not applicable in my case).

How brilliant of the NIH researchers to use a pallative and symptom management tool-- singing-- with known mental health benefits, and also turn it into a medical measurement.  You would need to see the same doctor in order for 'singing' to be useful in marking your status, but for this sort of care, that is often the case.

This is not a one-time thing.  A patient at NIH with the same condition named Mervin plays saxophone and provides a similar measure.

I talk in my other column about sonification-- the conversion of data to sound to assess the data's activity and change (rather than its precise measure).  This is one step better than sonification.  This is using the actual sound as data.  The music is the measure.

Bravo, Ashley, Mervin, and NIH, bravo.


p.s. that Gala raised $675,000 for the Children's Inn in one night.

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