Missed Opportunities

(*There is an update to this topic here )

Michael Phelps has Marfan Syndrome.

You would never know it listening to the commentary. They mention it in pieces; that he is 6' 4", and his  "wingspan" (as they call armspan) is 6' 7". That is a ratio of 1.04. (just short of the clinical cutoff of 1.05). They also mention that he is hypermobile; -or as they say; "double-jointed" in knees, shoulders and ankles. Phelps himself mentions Marfan in passing in his book. He says he has "early symptoms" is followed up every year by a specialist and his heart and aorta are fine so far.

I have been seeing connective tissue disorders (CTDs) everywhere I look these days: I was watching the Olympic Games and those segments they did on the Chinese gymnasts and acobats. I bet most of them has a CTD. In fact, most of the olympic gymnasts look suspect to me. Watch how their elbows and knees bend past straight. Most of these athletes probably don't have a clue that their hypermobility could be indicative of a genetic disorder.   Until later, when the pain and the dislocations start to get them.  And even then, most of them will blame competitive gymnastics in their youth for their joint troubles later on. CTDs are still very  unknown and misunderstood.

And it's not only the Olympics:  I was watching the season finale of "So You Think You Can Dance" (love that show) and the "battle of the poppers" really set me thinking. I think many of the dancers of SYTYCD look like they might have a CTD, but a couple of extreme examples are available in those poppers. OMG! Those guys, Robert Muraine and Philip Chbeeb both can do some very unnatural things, including dislocate bits at will.  Watch this and you will see what I mean.  Can you say Ehlers-Danlos or similar?

The sad thing about most people who have a CTD is that they have no clue their flexibility could be a problem. I remember talking to my aunt a few years ago, back when I was first diagnosed and she summed the thinking up pretty nicely: "Oh sure. We were all double jointed -some more than others, but we never thought that was a bad thing. We never thought we had a syndrome. We just thought that if school didn't work out, we could run off and join the circus..."  a full 40% of them died of brain bleeds, but they never thought that was related to their hypermobility. To this day, they don't think these events are related. And maybe it is a coincidence (or four), but to me, that seems unlikely to be true in all cases. Sad, eh?

So you would think, with all the CTD afflicted people getting all this very high-profile coverage, there would be more about CTDs in the news, right?  No, there isn't. I suspect most of these people don't know they might have a CTD. 

Except for Michael Phelps. He knows he has Marfan Syndrome and he has chosen to downplay it. That must be a huge blow for fellow Marfan sufferers out there, who see what Lance Armstrong has done for cancer awareness and see this huge opportunity for awareness and fundraising missed.

Now, Just because a person is a public figure and has a condition, it does not mean they have to be a spokesperson for that condition. It is not Micheal Phleps' job to be the spokesperson for Marfan or for anything else unless he chooses to do so. And I can't say I blame him for his choice not to do so.  He has different priorities right now, -publicly stated as "eat, sleep, swim (...get laid and win lots of gold medals" were not publicly stated, but he is a 23 year-old male Olympic athlete, so I think we can assume they are a given). Not much room for Marfan awareness in his heavy schedule. Or maybe he doesn't want this success to be attributed to Marfan, as opposed to his talent, skill, hard work and dedication. Maybe he has plans to take this on later, after the 2008 Games or after he retires from competition? Who knows?  But I doubt he will ever have such a huge global stage available to him again, and I do feel sad that this opportunity for awareness is being bypassed.

*There is an update to this topic here 

Comments

[DM]

I don't mean this as an attack on you, as I agree with most of your points. However, most of them are based upon a hypothetical situation - namely that Michael Phelps has Marfan syndrome.

In his book, he says that he had "early symptoms" of Marfan sydrome, not a "mild case."

In order to be clinically diagnosed with Marfan (without a family history), one needs to meet strict criteria. There has to be the major involvement of at least two body systems as well as minor involvement of another body system. Joint hypermobility and his wingspan, which as you noted, doesn't even meet the needed 1.05 threshold, are not enough to classify someone as having Marfan syndrome. In fact, they don't even qualify him as involving the skeletal aspect, since he would need another major criteria from the skeletal system (some would argue pectus abnormalities). He mentions that he's being followed by a specialist at Johns Hopkins, so apparently his cardiovascular system is fine. I'm sure if there were any cardiovascular issues, Phelps would not be undergoing such a vigorous swimming regimine. Obviously, we don't have further information about other aspects of his health, so it's hard to speculate.

However, making the statement that he has Marfan syndrome is at best speculative and honestly irresponsible. Additionally, as far as awareness goes, it is "Marfan syndrome," not "Marfan's."

[Patrick Sheehan]

Speculative, yes, but "long fingers and toes" are also noted in Phelps' physiognamy. Certainly no diagnosis can be made based on news reports and video footage, but even a casual, informed, observer must admit that he has some remarkable congruencies to Marfan indicators.

[DM]

Again, simple anecdotes about his anatomy are in no way definitive of him having Marfan syndrome. Part of the clnical diagnosis are the Steinberg thumb signs, which are stringent.

Interestingly enough, I think your blog post was plagiarized here - http://www.clevelandleader.com/node/6446

[One Sick Mother]

Hmmm. The Cleveland Leader is plagiarizing Yours Truly? Looks like it. Thanks for the headsup. Remind me never to go there again. They didn't give poor OSM so much as a thank-you.

But you know; looking at the picture in that article: Are those dislocated shoulders I see? Hard to tell -not knowing the man personally, but they look rather overextended to me. The elbows definitely are.

DM,
I appreciate your points, and I will go back through that piece and change the name "Marfan Syndrome" as you are right. It is the correct form. I am a bad Sick Mother for not researching that correctly. I knew it was named after a Dr. Marfan and assumed.

But regardless what it is called: I do honestly feel that Michael Phelps has it -and if not Marfan then some other CTD. You can plainly see it in his whole body and his facial features.

I could go as far as to say -without exaggeration that he has "connective tissue disorder" written all over his face.

-OSM

[Makk]

I only just became aware of this(although maybe heard it in passing on the Guiness WR program previously). This worries me. I've had a history of just running out of breath just sitting on the couch typing stuff out. My wingspan is somewhere between 180 to 183 cm, vs a barefoot height of 173(hard to measure this myself, since I can't check straightness of arm). I can bend my right thumb forwards to touch the forearm(or am I supposed to bend it away from the palm? If that's the case, I don't fall into this criteria), but not the left. I can place my hands palms together behind my back, forearms parallel to the ground. I can lock both my ankles behind my head(less so these days, but still doable individually). My left elbow when opened to maximum is a little further than horizontal(although I always attributed that to breaking it when I was 5). In the past 2 years, I've sprained both ankles once each. The first one while simply walking(the second was while sprinting, so more of a garden variety athletic injury). Both times my foot turned inwards(sole towards the other foot). Do all these mean I have Marfan's? I'm worried now.

[One Sick Mother]

Makk,

No-one can diagnose you over the internet, and don't let anyone try. If you google "Marfan Signs" both on regular Google and Google images you will see some examples of Marfan Syndrome and some more detailed descriptions

However Marfan is not the only connective tissue disorder out here and there are some overlaps between them. I have Ehlers-Danlos Syndrome (Google it and also "Beighton scale"), which is different. But even with EDS, I have a few Marfan signs despite being only 5'3".

If you have concerns about your health you should talk to your doctor, who should refer you to a specialist for evaluation. At very least you should get your heart checked out. I see a cardiologist annually for a full workup and my heart and aorta are fine. Those are the main concerns with Marfan or any connective tissue disorder.

It is possible to live a normal life with a connective tissue disorder. You just get checked out a bit more often and get to know the danger signs for complications. Education is a great weapon against this or any health condition.

I hope this helps and I am sorry if I scared you.

OSM

[Josh]

While it would be cool if Marfan's had some more publicity, judging by what Michael Phelps has written in his book, I get the impression he doesn't really understand the condition so well. That or he really wants to downplay it.

I have Marfans and i can say that if he does have it, he's really fortunate his doctors let him swim at all. Mine won't let me do anything.

[One Sick Mother]

Josh,

I later changed my theory about Michael Phelps. Now I think he has Ehlers-Danlos syndrome with Marfan characteristics. It explains why he would be allowed to swim. People with EDS generally have fewer and less serious heart complications.

The link to my new theory is here.
http://onesickmother.typepad.com/my_weblog/2008/08/am-i-the-only-one-who-sees-it.html

Regardless of his actual diagnosis, I do wish he was more upfront about it. It would make a big difference to regular people with these conditions like myself.

And if you are interested in finding other people with Marfan, check out two links on my blog:

Cloud viper
http://cloudviper.blogspot.com/

and Screw Bronze! http://elizabethmcclung.blogspot.com/

OSM

[Josh]

Thanks for the info!

I'll check out the links you posted.

[lieben]

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