Musings of a Marfan Mom

My Beef With the Michael Phelps Marfan Obsession

| 26 Comments

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.

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26 Comments

  1. Well said, Maya. WELL SAID!

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  2. 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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  3. 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:

    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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  4. 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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  5. Amen Sister! He’s just trying to be like us! (I have Marfan’s too)

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  6. 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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  7. 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:

    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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  8. He goes to a specialist once a year to make sure his heart is ‘OK’ for Olympic competition.

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  9. 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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  10. 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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  11. I’m glad I read this, so I can now stop worrying about Michael Phelps! I’m serious. He has so many traits that seem to indicate Marfan that every time I see him compete, I get tense, wondering “WHY does he do that? He’s risking his life!” Glad to hear that he is not (though I’d get a second opinion, if I were him).

    I’m probably so caught up with this because my son (now almost 22) has been told by several doctors to be checked for Marfan. I never knew what it was until the first doc mentioned it during treatment for a bout of meningitis. He has many of the “classic” characteristics: 6’4″, very slim, long legs and arms, large hands, flat feet, pectis deformity, small jaw, poor posture and other things I forget at the moment.

    He treats the idea of getting evaluated as an annoyance and refuses to get any more evaluation other than the 2 echocardiograms he had before turning 21, and a slit-lamp eye exam. He’s very cavalier about it and says, “Why worry when I can have fun? If I’m going to die, then there’s nothing I can do.” I’ve tried explaining how it’s a progressive condition that can be managed, but no go.

    Can anyone offer a way to communicate with a young person who is this offhanded about his health? I think he’s afraid to seem “different” or “defective” and that the “life philosophy” is just a smokescreen. Any 20-somethings want to weigh in?
    Oh, I should mention that aortic aneurysms run on my and on his father’s side of the family. My husband’s brother probably had Marfan, and died from a dissected/ruptured Aortic aneurysm at age 40. His grandfather survived TWO of them but later died of heart disease.

    His own father has aortic root dilation and mitral valve prolapse, both of which will necessitate surgery sometime soon.

    Help me help my son!

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    marfmom Reply:

    Hi! I’ll try to send you an email this evening after I get the kids in bed. Re: Michael Phelps though: he is being monitored at Johns Hopkins, home of a very large and amazing Marfan clinic so you can rest well-assured that his (non) diagnosis is most likely accurate :-)

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  12. If Michael Phelps does not have Marfan Syndrome, then why is he being so closely monitored by Marfan specialists? Reading his statements, it seems like he does have Marfan, but has not (yet) developed dangerous manifestations.

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    marfmom Reply:

    If he says he doesn’t have Marfan, there is no reason to disbelieve his statement. My guess is that if he has anything he has MASS Phenotype. According to the new diagnostic criteria, without a family history, aortic involvement, or lens dislocation, a person does not meet the criteria for Marfan. As Michael Phelps has none of those, he does not meet the criteria to be diagnosed.

    As to the continual monitoring, he’s an Olympic athlete: of course they are going to monitor him carefully for anything that could conceivably go wrong. Furthermore, the new diagnostic criteria does suggest periodic continued aortic monitoring as rarely a person can develop aneurysms later on. Usually aortic enlargement happens prior to age 20.

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    Cdn geneticist Reply:

    He doesn’t actually say that he doesn’t have Marfans. He just says that ‘everything is OK’. Why would he be monitored by physicians specializing in Marfan Syndrome if he was negative? There is no definitive molecular test and he has several clinical features.

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    marfmom Reply:

    Actually, he’d be continually monitored because that is the proposed standard of care under the new diagnostic criteria (July 2011). The recommendation there is an echo every 2 years if you have certain clinical features of Marfan syndrome. A related disorder also found on FBN1 called MASS Phenotype carries skeletal features but no aortic enlargement (the aorta sits on the large side of normal) or risk of dissection. Because rarely an adult with Marfan syndrome can develop aortic enlargement later in life and therefore move from a MASS diagnosis to a Marfan diagnosis, periodic monitoring is beneficial in order to be on the safe side.

    Saying that everything is ok can be taken to mean that Phelps does not have aortic enlargement. He does not have lens dislocation, either. The new diagnostic criteria say that without family history, you basically have to have aortic enlargement in order to have a diagnosis of Marfan syndrome. Therefore, Phelps does not have Marfan syndrome.

    Surely, as a geneticist, you know that “several clinical features” does not a diagnosis make.

  13. It does not appear that Phelps has Marfan’s. He is too muscular for Marfan’s. The large/long lower jaw, large hands(esp arm span greater than height) and feet can also be consistent with increased growth hormone production ( prepubertal (pituitary gigantism) or growth hormone injections at age 10-13 ( hopefully not!) Do worry about some of the female swimmers coached by same coach have large lower jaws.

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  14. But he does have a family history.

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    marfmom Reply:

    Which of his parents has confirmed Marfan syndrome?

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  15. Thank you for your post! My son has Marfan and it is very important for him to know that there are limits. He is in Boy Scouts and has to pace himself at all times.

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  16. Wow Maya, great defense articles, but isn’t it sad that you have to defend what is medically proven? I value your knowledge and the time you put in on your blog. And yes, our teens, and 20 somethings, are amazing young people.

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  17. I guess that your not as informed or as smart as you thought. Learn to keep your opinions to yourself. Years later…………

    Home > Health and Medical > Sports > Does Michael Phelps have Marfan Syndrome?
    Does Michael Phelps have Marfan Syndrome? starwin December 23, 2014 Health and Medical, Sports No Comments

    Home > Health and Medical > Sports > Does Michael Phelps have Marfan Syndrome?
    Does Michael Phelps have Marfan Syndrome? starwin December 23, 2014 Health and Medical, Sports No Comments
    The most celebrated Olympian and Swimmer Michael Phelps has been regarded the most incredible swimmer in the world. He is known for his extremely tall and thin physique, great flexibility, speed in water faster than any other human and a grand wingspan. Apart from his achievements and efficiency he has been in news because of his curious physique associated with Marfan’s syndrome. The rumor became a truth when Phelps himself confirmed having Marfan’s syndrome although he tested negative for it but he still meets the criteria for the syndrome which a unique connective tissue disorder is affecting about 1 in every 20,000 people caused mostly due to a pathological condition of the protein fibrillin-1, a structural protein.

    The ones suffering from Marfan’s are extremely tall and have longer bones, limbs and fingers. Their detached retinas, larger aorta, and leaky heart valves make it a fatal disease and a rare genetic disorder. Michael Phelps, according to critics has been helped by this disorder helping him in his athletic pursuits because of the height and flexibity which is generally an adavantage for the athletes. However this fatal disorder can be seen more in the context of posing threat to his life. In one of his training sessions his heart pace was alarmingly high that made him undergo tests for the fear of this syndrome. There is no doubt that he has the classic symptoms of Marfan’s syndrome with an elongated stature of about six feet and five inches and an arm span of six feet and seven inches (more than his height) an unusual clinical cut off. According to his mother, he grew unevenly with extremely long arms and unusual ears.

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    marfmom Reply:

    I don’t really know what your point was, other than to be snarky. Michael Phelps has said he was checked at Hopkins, which houses one of the top Marfan clinics in the world, and that he was found not to have it. End of story. Some random website feeling like he has it means nothing.

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  18. Because MP does not have aortic root dilation, or mvp he is not dx with Marfan, but he does have many of it’s physical markers. His drs give him yearly echos, you could pass that off as olympic level physical monitoring, but more likely he will continue to get them as on going monitoring to make sure as having many Marfan physical traits that he does not develop any heart issues ongoing. I believe he either is very lucky, or his swimming and healthy lifestyle training has made his heart strong and prevented Marfan heart related issues, that makes him a role model for children with Marfan, swimming, moderate muscle building and aerobic exersize done in moderation are good. MP after many years of physical training is capable of doing physical exercize that many Marfan sufferers cannot, we need to live the healthy-est life our bodies can accomidate, moderation in physical exercise is beneficial, so is yearly heart monitoring all things that have benefitted MP.

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