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Saturday, November 22, 2008

To the Summit

We all want to see a cure for muscular dystrophy, but it's important that those of us affected by the disease, patients and families alike, don't lose sight of the fact that cure or no cure, there is still a lot of life to be lived.

That's why I decided to participate on a panel of college students and graduates during a session today at a "Muscle Summit" convened by the local chapter of the Muscular Dystrophy Association (MDA). The goal was to show parents that higher education -- and employment -- are possible even with muscular dystrophy. My message was that the university setting offers a microcosm of the world, allowing many students with disabilities their first chance to experience things like independent living, employment, and social activities. I know I wouldn't be the same person had I not gone to college.

Admittedly, I haven't been involved with MDA much since I was a child, when I served as a poster child for the local chapter of the organization, attended summer camp, and volunteered at the annual Jerry Lewis MDA Telethon. As I grew older, I (and my friends with DMD) concluded that MDA was not focusing enough on the needs of the young adult/adult population.

But a few years ago, I returned to the MDA-sponsored clinic at the hospital. Meanwhile, the local chapter has made an effort to reach out to adults like me. I've been receptive because I believe that if you're not willing to be part of the solution, you may be part of the problem.

So today was a first step for me. I think it went well. If asked to participate in next year's Muscle Summit, I will gladly do so.

Tuesday, November 18, 2008

You Want a Piece of Me?

The University of Utah said they did -- want a piece of me, that is. A piece of skin from my upper arm to be specific. You see, I am part of a genetic registry of people with DMD, maintained by the university (I gave them some of my blood a while back). Apparently, I am part a relatively small subset of the DMD population. Researchers are studying a possible intervention (in the very, very early stages) for that subset and required skin cells for said study.

So today, I paid a visit to my dermatologist, who performed a skin biopsy known as a skin "punch". The procedure took less than five minutes. First, a nurse injected my arm with a local anesthetic. Then the doctor, using a cookie cutter-like instrument removed a piece of skin the size of a pencil eraser. Finally, he closed the small wound with a dissolvable stitch. Now, I've often heard doctors say, "This won't hurt at all." But let me tell you, other than the needle, I didn't feel a thing. In fact, if I hadn't watched the doctor, I never would have known he had just removed a piece of my skin!

When I was initially contacted by the university, I agreed without hesitation, even though it meant giving a part of myself to something that almost certainly will never directly benefit me. Naturally, I was asking myself what I had gotten into when the nurse rolled up my sleeve and prepared that syringe! But it felt like the right thing to do. I would never say that my existence is a miserable one, but if I could help someone avoid the challenges I have faced and continue to face in my life, I'd do it every time. Even if I have to give up some of my precious skin!