Saturday, September 24, 2011

Who's Who? Is he? Am I?-Marfan's Syndrome Part IV


While I sat in the foyer of Rockford Plantation in Lancaster, Pennsylvania, I sat under a painting of General Edward Hand. All I could think of was, "Did he have Marfan's Syndrome?" Interestingly the tour guide even sat there and made note of his exceptional height. Recently I found out someone did a google search on "Michael Phelps Marfans Syndrome" and found my blog. Many athletes have "the look" and therefore are prime candidates for the testing. I decided to check into Phelps' story.

Only a small percentage of the population has Marfan's Syndrome, so I was actually encouraged after reading a news article about Olympic gold medalist swimmer, Michael Phelps. For another news article with more details, read this. Apparently he went in to Johns Hopkins, *the* research hospital for Marfan's Syndrome research. Very interesting in that his story began the same as my son's: Phelps mentioned a rapid heart rate and my son has mentioned the same along with a few other things. Also I put my son in swimming lessons one summer, 2005, where he took all 4 levels in one summer. He was getting that swimmer's thick neck from all that swimming. It was that very summer that a weight gain check (because he's always had trouble gaining weight, he was born a preemie and the rest is a very long story) that the doctors started examining him for Marfan's.

Because Marfan's Disease is a genetic condition that affects connective tissue, which is throughout the body, many other body systems can be affected. The most dangerous is that the aorta has been known to rip away from the heart, so a yearly checkup with the cardiologist for an EKG is imperative. Phelps said he has yearly checks at Johns Hopkins and all is well. My son had his EKG last July and all was well. My son's geneticist asked me if I ever had an EKG and I did about 5 years ago. My cardiologist was also my friend's husband and was doing this due to other reasons. He confirmed mitro valve prolapse but he said that was minimal enough to not require further concerns. Other than that all looked well. By the way, mitro valve prolapse is an indicator for Mafan's Syndrome.

For me Marfan's has only come up two times that I'm aware of. When I had my first dizzy spells after I graduated from college, I was in the emergency room and the doctor asked my mom if I had Marfan's. We had never heard of that before. Then when my kids saw the developmental pediatrician due to developmental delays when they were toddlers, the first thing the doctor asked me was, "Are you related to Abraham Lincoln?" I thought he was nuts because I don't think I look anything like the extremely tall and lean man with dark features and a beard in black and white photos. (The medical profession is debating whether Lincoln had Marfan's Syndrome.) Then he explained the Marfan's characteristics as he asked if I played the piano. Yes. How many keys can I span? Nine! That is a great thing when playing more certain compositions. We talked about how this "good thing" in piano playing was an idicator for a serious medical issue. And that was the last I heard of that until my son's exam around 2005.

We've watched Michael Phelps win every single one of his gold medals. My son knows exactly who he is. Not that I'm glad Phelps may have this condition (I'm still not sure if he has this disease but he still gets yearly checks, like my son will, regardless of the outcome of the tests, because it is life and death and they are still learning about the disease), but it is encouraging to not be alone in the journey. Here's another fascinating article on how the symptoms that look like Marfan's may contribute to his prowess in the pool. I thought these articles would help the family know what to expect where the articles can be easily found and accessed.

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