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.
timeinc.net
March 29, 2010 at 8:55 am
Well said, Maya. WELL SAID!
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March 29, 2010 at 9:11 am
Great points, Maya. But there is also a very good message here in the Michael Phelps story — he has some features that are suggestive of Marfan syndrome so he went and got evaluated by doctors who are familiar with Marfan syndrome… and, if I remember correctly, he also gets monitored. The key thing is to make sure you don’t have it — and that your aorta is normal — if you have some signs. He did the right thing and I agree that it is frustrating when the media gets it wrong! There was an excellent article about Michael Phelps and Marfan syndrome on FoxNews.com (regardless what you might think of them). It wasn’t the story the writer planned to right, but she made sure to learn what she could and get the facts. Here’s the link: http://www.foxnews.com/story/0,2933,408023,00.html
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March 29, 2010 at 9:12 am
Need to edit what I previously posted:
It wasn’t the story the writer planned to WRITE, but she made sure to learn what she could and get the facts.
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marfmom Reply:
March 29th, 2010 at 9:25 am
at’s a very good point, Eileen! It’s very important that he went and got evaluated and is monitored and I hope that anyone who even thinks they *might* have Marfan or a related disorder goes to the NMF to see what tests they should ask their doctors about.
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March 29, 2010 at 9:23 am
You are so absolutely correct Maya. Only the correct kind of exposure is the kind of exposure we want. Never in this world would I want my son doing the things it takes to be at the world class level at Michael Phelps. Thank you for your thoughtful and postive response to the inaccuracies of Marfan syndrome and Michael Phelps.
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March 29, 2010 at 12:13 pm
Amen Sister! He’s just trying to be like us! (I have Marfan’s too)
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March 29, 2010 at 8:37 pm
Maya, I think our current teens are the HEROES with Marfan as they are such great role models for the younger kids. I am very proud of all of the Marfan Teens.
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January 3, 2011 at 5:46 am
Michael Phelps DOES have Marfans.
In the book “Michael Phelps: Beneath the Surface,” he says:
“Fortunately everything was, and still is, okay. I have been tested once a year ever since at John’s Hopkins under the direction of Dr. Peter Roe, and the tissues are strong, the aortic route is clear and my heart is in good shape.”
Marfan syndrome may present itself in many different ways, according to the Foundation’s Web site: Some patients are mildly affected and have only a few of these characteristics, while others are severely affected.
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marfmom Reply:
January 3rd, 2011 at 12:18 pm
No, you’ve taken that quote out of context. Everything was ok as in he does not have Marfan. He spoke on this in interviews during the Olympics as well, explaining that he does not have Marfan.
All Marfan patients have aortic disease or the potential for aortic disease (meaning they have a mutation that has been identified as causing aneurysms). So, while yes, some patients are more mildly affected than others, everyone has the risk for aneurysms and therefore it’s not safe to participate in the kind of training that he does. At worst case Phelps has MASS Phenotype, which carries no aortic risks.
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January 3, 2011 at 5:49 am
He goes to a specialist once a year to make sure his heart is ‘OK’ for Olympic competition.
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September 2, 2011 at 7:02 am
Hi, I’ve been wondering for a while if i have Marfans or a syndrome like it. I suppose i’m in the position that i don’t realy want to go check it up unless ino for shore, reason being im a proud person. I’m 21 years of age about 6ft6 in height and just under 18 stone. I have naturaly got a good physique, wide shoulders and naturally quit strong. As a kid i wasn’t as big though and have broken quite a few bones. At the age of 19 i was in the gym working my legs (deadlifting, then biked home). once i got home i turned awkwardly dislocated my nee, fell and broke my arm. my Arms are also quite flexable. few other symptoms i worry about is a few times my ankle has not dislocated beneath me but has seemed to have sprained quite easily. My feet and hands are fine though, wrists seem to have some pain after going gym though. length of my arms to my body is fine, eye sight is fine and have never had problems with my heart before. Other symptons which i have read about marfans etc flat feet, sleep apnea, feeling cold etc i do not suffer with. another note when i had dislocated my nee i had saw an consultant who wondered about this condition as he was surprised i had dislocated my nee so easily, he had checked my palet and said it was fine, checked my face for abnormalatis which sometimes can show with this condition long face etc?? and said maybe i’m just naturaly so tall?
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December 14, 2011 at 9:51 am
Thanks for clearing this up. I was thinking the other day how in the world can he train for competition, have Marfan and not be risking his life.
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