I’ve had enough people ask me what my problem is that I figured I might as blog about it.

First of all, Michael Phelps does NOT have Marfan. If major newspapers actually CHECKED THEIR SOURCES before writing articles, they would know this. In his autobiography, Phelps writes about going to Johns Hopkins to be evaluated and being told he doesn’t have Marfan.

If Hopkins, home of Dr. Hal Dietz, gives you the all clear, chances are you’re good to go.

So, that’s the first part of it. I also resent the articles that suggest Phelps has some kind of advantage because of having Marfan (which he does NOT have). He happens to be tall with long arms. He hardly got to where he is today because his arms are long.

But let’s imagine for a minute that Michael Phelps does have Marfan. During the 2008 summer Olympics, I heard a lot of people call him a great role model for their children with Marfan. THAT is my biggest beef.

IF Michael Phelps had Marfan, that means that on a daily basis he is participating in activities that are not recommended for people with Marfan and putting his life in danger. (Note: I don’t mean swimming in general – mild to moderate swimming is fine and I myself did a modified swim team for 2 years in high school – I mean the ultra competitive swimming, weight-lifting, running etc. that comes with being a true athlete.)

Why would I want my child to emulate that?

I know people talk a lot about needing star power to raise awareness, but would we really want someone leading the way who is a poor example? Phelps wouldn’t be saying “Look what I’ve achieved having Marfan!” he’d be saying, “Look what I’ve achieved while pretending that I don’t have Marfan!”

I think role models of people living successfully with Marfan are very important for our youth. My son ended up not having Marfan, but regardless, these are some of the people I’d want him to look up to (in no particular order):

– Julie Kurnitz, a talented actress who created a show called Clinical Trials, about her life with Marfan. She performed in cabaret and various off-Broadway productions. She was vibrant and funny and warm and she worked tirelessly for the National Marfan Foundation.
– Barb, one of the first people with Marfan I ever met. She was a teacher for years, who started volunteering with the NMF almost since its inception and continues to serve both inside and outside our community. She and her friend started the Columbus group that was my first introduction to the Marfan family.
– Vincent Schiavelli, one of the best character actors in America. He’s been in everything from Ghost and Tomorrow Never Dies to Sabrina, the Teenage Witch and Family Guy. He had a passion for the teens and set the standard for the NMF’s teen program.
– Any of the teens in our program. These young adults are amazing. Pick one at random and you’re liable to find one who has a positive attitude, is finding something to excel at, and raising awareness of Marfan and related disorders all at once.

So just to be clear: Michael Phelps does NOT have Marfan. Sure, someday having a famous spokesperson with Marfan will be great, but only if s/he is TRULY a role model our kids can look up to.