Marfan's Syndrome: Michael Phelps' Blessing or Curse?
America's golden boy, Michael Phelps, has been dominating the world's headlines for his accomplishments in swimming and at the 2008 Beijing Olympic Games. But there is something that you probably don't know about him. Michael Phelps has a rare genetic disorder that has undoubtedly helped in his athletic endeavors, but that may also one day prove to be a curse. That disorder, which affects 1 in 5,000 people worldwide, is called Marfan's Syndrome, a connective tissue disorder which characterized by long limbs and long, thin fingers.
Phelps stands 6'4", and has an armspan of 6'7", which is greater than his height. That is a ratio of 1.04, which is just shy of the clinical cutoff of 1.05. He is also said to have hypermobile joints in his knees, shoulders and ankles.
In his book, "Michael Phelps: Beneath the Surface" written by both Phelps and Brian Cazeneuve, Phelps describes the syndrome:
"My heart rate was accelerating and Bob suggested I see the doctor. Because I was very flexible and had long hands and feet. I had some early symptoms of Marfan Syndrome, a disease that affects connective tissues and can be fatal if there is leakage to the vessels that lead to the heart. If you reach out your arms and form a T and your wingspan is longer than your height, you can be at risk. In my case, those measurements have always been very close. I didn't know at the time why the doctor decided to look into this. My mom and Bob didn't want me to freak out, so they told me it was simply a good idea for young athletes to have an EKG test in order to look at the heart.
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 rout is clear and my heart is in good shape - as long as my Baltimore Ravens are winning."
Having long limbs and extra flexibility is generally a good thing in the athletic population, it simply allows them to master feats that those of a more standard proportion and flexibility couldn't dream of. Those may be some of the "benefits" of having Marfan's, however, there are some very serious downsides of the potentially fatal disorder.
There is no cure for Marfan syndrome, but life expectancy has increased over the last few decades. Nevertheless, the best way to treat the syndrome right now is to have regular checkups by a cardiologist and treat each issue as it arises. Some people with Marfan take preventative medication to slow the progression of aortic dilation.
Regular checkups are needed to monitor the health of the heart values and slow the progression of aortic dilation and damage to heart valves by minimizing blood pressure, minimizing the heart rate, and eliminating arrhythmia. If dilation of the aorta progresses to a significant diameter aneurysm, causes a dissection or rupture, or leads to failure of the aortic or other valve, then surgery becomes necessary.
Flo Hyman, a 1984 silver medal Olympian in women's volleyball, was another famous athlete with Marfans. Hyman is regarded as one of the best volleyball players of all time but tragically died during a match. Her case was undiagnosed until an autopsy revealed her disorder.
Other notable figures in pop culture who have Marfans include Jonathan Larson (author/composer of the musical "Rent"), Joey Ramone (of the band "The Ramones"), Robert Johnson (Blues singer & guitarist), Vincent Shiavelli (actor), Sir John Tavener (contemporary British composer), and Bradford Cox (frontman of bands Deerhunter and Atlas Sound).
Historical figures believed to have had Marfans, although they were not diagnosed with it at the time, include Tutankhamun and nearly a dozen other Egyptian pharaohs, Charles de Gaulle, Niccolò Paganini, Abraham Lincoln, and Osama bin Laden.
Marfan's Syndrome is also believed to have caused the sudden death of multiple atheletes who have spontaneously collapsed and died either during or immediately after an athletic event or performance. Fortunately for Michael Phelps he has some of the world's best doctors monitoring his health, but the risk will always be there, especially when he continues to push his body to the limits in competition.
Comments
Great swimmer...but he is a
Great swimmer...but he is a Ravens fan. Man, that is too bad.
To make matters worse is his
To make matters worse is his school: University of Michigan!
Too bad he didn't swim for
Too bad he didn't swim for Mich.
It is a shame that Phelps
It is a shame that Phelps doesn't raise awareness for the disease. He wrote that short snippet in his book when he could probably go on a crusade against the disorder that is so lethal.
It is a shame....
I agree, it is a shame that Michael has not raised awareness about Marfans syndrome or other connective tissue syndromes that are closely related to Marfans. When I began to suffer from ehlers danlos syndrome(a genetic connective tissue disorder closely related to and studied by the same specialist who study marfans syndrome) I was denied health insurance coverage affordable health care coverage. The local md's at the low cost clinic near my home don't even know or care what a genetic tissue disorder is and even refused to read the letter I brought from the diagnosising genetist. Unfortunately my story is not the only one of it's kind. It happens to many people who suffer from similiar disorders. One of the lasts things a genetist said to me was, it will take a great celebrity being diagnosed with a connective tissue disease to bring such diseases to the public attention and funding could follow. Look what Lance Armstrong did for cancer. I know Michael deserves his privacy, but it would be a blessing if he just mentioned the problems that many people with CTD(connective tissue disorders), face everyday. Maybe some of us could be spared an early death or a less pain full tomorrow. Thanks.
I'm 18 and i have suspected
I'm 18 and i have suspected Marphans... I am just out of hospital as i suffered some atrial fibrilation due to my pectux excavatum (spelling) i would dearly appriciate it if Phelps could raise some awerness of marphas, there is too many people who do not know enough about the disorder, and knowing your disorder and understanding it is half the battle. Please Michael take a stand for people suffering from marfans syndrome.
Thanks
I completely agree. I have
I completely agree. I have Marfan Syndrome and was also a swimmer. Unlike Phelps I had to discontinue competitive swimming in the summer of 2008 after open heart surgery due to a more advanced case of Marfan Syndrome, and ended up missing my senior year. I have recently been told that I need another surgery "ASAP" and wonder if this could have been avoided if Phelps had decided to act as a figure head to fight this CTD and brought more nation-wide awareness and concern. I in no way place blame on Phelps, but I wonder if he would have crusaded the cause a bit more if he weren't so blessed as to not have some of the more debilitating symptoms.
Awarness !!
I agree I have Marfan Syndrome and not enough people no about the condition I am only 16 and I found out when I was 13 ... I played sports (swiming,V-Ball,Soft Ball and Basket ball).Its hard to be told you cant do those things anymore .If he does have it then I know its not impossible for someone like him to have it . You all should check out NMF (National Marfan Foundations) WEbsite there is a lot of useful inf o.And if you have slightest feeling you might have it get it checked out .I think you would rather know what you have before you die from it because you dont know how to control the condition . Micheal Should Raise Awarness !!
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By the way joey Ramone didn't have Marfan's Syndrome.
Symptom or diagnosis
Was Phelps ever diagnosed with Marfan's? The snippet on page 66 certainly does not indicate this...it just says he had some features which can be early symptoms of the disease.
What bad journalism! Phelps
What bad journalism! Phelps was never diagnosed with the disease...ever!
He was checked and cleared of the disease at Johns Hopkins. He is re-checked every year, just in case.
There is no definitive test for the disease, just a series of symptoms that add up. Which is why he is re-tested on an annual basis.
Please make an effort to check your facts before you post something.
Are you that niave? They are
Are you that niave? They are just checking him every year because his heart can explode at any minute. It's pretty clear that he has the disease. The guy is a freak of nature. Admit it to yourself.
Freak of Nature
You must be the Freak of nature , Just cause he may have the Condition doesnt mean he is any diffrent than any other person .I bet if you met someone with Marfans You wouldnt even no they had it untill they told you ... So get a life freak by the way Phelps is awesome ....!
RE: What bad journalism! Phelps
Maybe you should read more carefully it says right in the article that he has Marfan's. I copy and pasted it below so you wouldn't miss it this time.
"Michael Phelps has a rare genetic disorder that has undoubtedly helped in his athletic endeavours, but that may also one day prove to be a curse. That disorder, which affects 1 in 5,000 people worldwide, is called Marfan's Syndrome"
One of the major definitive tests for the disease is an EKO, performed every year to monitor any growth from the disease. This disease is genetic, I have more than one family member who has been DIAGNOSED with it. So you might want to check your facts before you post something.
No, maybe YOU should read
No, maybe YOU should read more carefully. We KNOW the article says he has it. But what he's saying is the article is using Phelps' book as the source, and the book does not say he has it. In fact other news sources have mentioned it's unknown.
NO NO NO
technically he could have minor marfan and yes he would have to go back every year to check it i have studied marfan and all the symptoms can be overexagerated though so marfan is possible for michael phelps!!!!!!!!! The only feature i haven't heard is scoliosis (which on some occasions doesn't happen) and sight problems (also will not happen all the time)
p.s joey ramone did
isn't one of the things
isn't one of the things about marfan's that you have to restrict how much athletics you do?
Shows how much you know
Shows how much you know about it. I actually have Marfan's, and I can tell you that it is NOT a cookie-cutter condition. Just like ANY disease, there are those who are more severely affected by it than others. I've met some Marfan carriers that don't look like they have it at all, but have severe heart problems, and I've met some that look like they have a severe case but they only have the appearance-symptoms of the disease. Also, you CAN find out if you have it--you don't just guess based on the symptoms. Since it's a genetic disorder, you can do genetic testing to see if your 15th chromosome is genetically mutated or not.
So before you go preaching like an expert, maybe you should know the facts first, yeah?
well....that is why the
well....that is why the doctors said he has marfans syndrome. no testing is available but criteria has to be there. in a patient with no family history of marfans, one must have signs/symptoms from at least 3 body systems that fit marfans. eyes are one also. slit lamp testing is done for that and im sure he went to an eye doc. doctors aint stupid, ys know. i should know. i is one!!
He's no more a "freak" than a 7' tall bball player !
For the users that are calling Phelps a "freak", he's no more of a freak than someone who has it in their family genes to be tall & so they're great at basketball because they are over 7 feet tall.
He's no more of a "freak" than someone who has it in their family genes to be muscular & so they're great at football or weight lifting.
We all have good & bad elements inherited in our genes. It's what you do with them that makes you into a world class athlete. . .
i really llike the way you
i really llike the way you put that :]
thats an easy thing to say
thats an easy thing to say except most peoples "bad elements" cant kill them on the spot. without warning, like it almost did me. Marfans is a serious condition that what most people dont know is that once, and even if they catch it in time, aortic aneurisms can reoccur, without warning. not to mention the other perks of this illness like spontaneous retina detachment, and the beloved Thoracic Pneumathorax. its a never ending process of trials and tribulation. if phelps has this condition, bless him for being able to push his body as hard as he does.
and YES...joey ramone DID have marfans.
It may say that in the
It may say that in the article, but the article relies on Phelps' book, which does not say he has Marfan syndrome. All it says is that he has a few of the physical attributes of it. (He lacks others.) For someone to conclude from this that he has the condition-- a diagnosis that his doctors have not made-- is irresponsible journalism and shows a lack of reading comprehension, at the least. Go to Phelps' book and try to find a statement he has Marfan syndrome-- you cannot.
Marfan's is complicated
Marfan's has lots of possible symptoms that make a person a little bit different. Some things are good, some are bad, and a few are really bad.
I am really tall and have the same arm length/height ratio as Phelps.
I went to to a Marfan's specialist and had my heart valve and Aorta checked with an ultrasound imager (same as pregnant moms). I'm fine. If your not so lucky -- they are testing a "cure" that is having fantastic results -- a particular blood pressure medication.
Why is Marfan's so complex ? The gene is known -- why isn't there a simple genetic test like for Cystic Fibrosis, Tay Sachs, etc ?
The reason is that the affected gene for Marfan's is ~1000 times bigger and can be affected in many different ways.
Not only that -- it is a dominant gene -- you get one from each parent, and in some parts of your body it is turned on, other parts it can be off -- this is called the "expression" of the gene and it seems to be random. So if you're lucky -- you can get the height and flexibility, but not heart problems.
The clinical diagnosis is very demanding -- if you don't have a family history or serious heart problems you will not be diagnosed -- probably a good thing is you ever want reasonably priced health insurance .
If you really want to know if your genes are affected by Marfan's, you can get an expensive genetic sequencing done. These tests don't really solve anything for you, but some severely affected Marf's are now testing their embryos to avoid passing it on to their children.
If you have any symptoms, get your heart checked -- it could add many years to your life.
Check out http://www.marfan.org/
Loeys Disease, ETC
I agree that I haven't seen it anywhere except this article that Michael Phelps has Marfan's. He has a right to privacy about this BUT I hope that if he does have it that he will go public with it and raise awareness and further research.
Michael certainly has several of the outward symptoms but some people can have those and not have it. If he has it then it could be genetic or a sporadic mutation that caused it. Either way his family members, close and extended need to be looked at as well.
I have two daughters thought to have had it but it turned out that they have Loeys Dietz Syndrome another connective tissue disorder that is closely related to Marfan's as is Ehler Danlos Syndrome. Even though they are sisters they have different physical characteristics: one is six feet tall with two curves in her spine, long fingers, hypermobile joints, etc.; the other is only 5'7" with pectus excavatum, blue sclerae,hypermobile joints, a bifid uvula, etc. They both went through a clinical evaluation and blood work that gave us a definite answer. They both have their heart checked annually and to date have had no restrictions though we practice no impact sports or highly strenuous activity that causes too much stress on their body. Fatigue is a huge issue for them and one of them has had Crohn's Disease, also. My main concern for them are aneurysms or organ ruptures due to the weak collagen/fibrillin as this is how their father died, (a brain aneurysm), at the age of 38 when they were just toddlers. He also had been a runner and his heart was never affected...
My girls are blessed in that they we have a diagnosis and that their health issues to date have not been as severe as many with connective tissue disorders. Research and education is very much needed as many even in the medical community don't know about connective tissue disorders and therefore people go undiagnosed and untreated. You have to learn how this disorder can affect everything about your body and thus become your own advocate... I believe that this disorder along with all connective tissue disorders is more common than it is now thought but people just don't know...
AWARENESS LEADS TO KNOWLEDGE AND KNOWLEDGE LEADS TO HELPING YOURSELF AND HELPING OTHERS.
i have marfans syndrome
I have marfans syndrome. A major symptom is a deformed chest. The odd chest is the main reason that I made a trip to the doctor and that is when I was told that I had marfans. My chest caves in around the sternum atleast an inch. Limits how far my lungs can expand out so at times I do get short of breath. In high school I did play basketball and many games I stayed on the court for the whole game. If you are in good shape then you can overcome some limitations from marfans. I am also really tall compared to my parents. Im 6ft4 but only weigh 150lbs so I am really thin for my height. Really just cant put on the weight and the doctor said that it might not be a good thing to put on weight.
If he does have marfans then i would have to say that it isnt an extreme case. He is still muscular and doesnt seem to have any extreme disformaties.
Phelps doesn't have Marfan.
Phelps doesn't have Marfan. He probably has never even been worked up for the disease. If he had, he would have been sent to a specialist instead of just seeing his pediatrician about it. Futhermore, he spelled the name of both the hospital (Johns Hopkins) and doctor (Rowe) wrong. Not very convincing.
My pediatrician was the
My pediatrician was the first one to mention to my parents about the disease. none of my other doctors were even thinking about it when they saw me. for nearly 18 years! GOOD DOCTORS too! now im 27 who needed both lung surgery and heart surgery because i was never diagnosed properly by my regular doctors. i wouldnt be so quick to count out a pediatrician when then they could be the one who notices more things of that nature.
and mann, youre a hypocrite. im sure if we knew your vices, especially if it was something as simple and nonthreatening like smoking pot we wouldnt be so quick to judge you. but that is here nor there, this is about Marfans, not social behavior. why dont you stick to the topic, and get off your soapbox.
mann. i used to love
mann.
i used to love michael phelps .. untill i figured out he did marijuNA
mann.
When did you figure that out?
Was it when you heard it in the news repeatedly?
Good work!
Hey mann
You are a %$&^^ moron mann, sorry but it is true.
i need more info fo my report on marfan syndrome
i wish that hed emailed me anddd my freind bak bout marfan synddrome
Oh my gosh!
Oh my gosh! You people! Did he have it or not? GRRRR! I really need to find out the names of well-known people who've had marfan syndrome, and I can't seem to find ANYONE who people are SURE had it!
Co-dominance
Whether or not Michael Phelps has the signs for Marfan syndrome, doesn't necessarily mean that he has the disease. The reasoning for this is very simple. Lets say that he does have a family history of the disease. Not that I would know this, but lets just use this as an example. Offspring of a parent that passes on either the dominant or recessive gene for a genetic disorder can pass on the signs regardless. Although Marfan is an autosomal dominant disorder, if he inherited the normal recessive gene, and the recessive gene has an increased ability to produce proteins that result with a stronger expression of this recessive gene (no signs of Marfan), co-dominance can occur. With co-dominance, only some side effects might result from the disorder. Example, Michael Phelps is a very tall individual, with an evidently longer arm span, longer hands/feet, increased flexibility, etc. However, he does not show the other mandatory side effects, such as ocular defects, back curvature of the knees (that I am aware of), as well as the aortic dilation, etc. So, due to the fact that he has some signs of the disease and not others, Michael Phelps might present co-dominance with those specific genes. That is to say, only if he actually has a family history or the disorder, as well to diagnose this disorder it would be difficult to establish if no family history is known, or if there simply is no family history revealing Marfan, especially since the gene is dominant.
NOT
he has hypermobility syndrome, not marfan's
michael phelps
You do not have to have every single sign of a disease to have it. He most likely has marfans. I know a family that has 3 children. All with Ehlers Danlos syndrome. 2 of them also have marfans. Normal hearts, normal eyes. My son has Ehlers Danlos syndrome and Osteogenesis Imperfecta. These are all in the same connective tissue family. The doctors at NIA/NIH are baffled because he tests negative to all of the genetic defects they have found with his syndromes. They still say he has them (If it looks like a duck and quacks like a duck, etc). Why else would Phelps be checked yearly. You don't just develop it overnight. It is genetic. They are probably doing Echocardiagrams every year to check his heart. An EKG only shows the electrical activity. NOT THE STRUCTURE. HE NEEDS ECHOS.
VES DIMOV IS SPREADING LIES
VES DIMOV IS SPREADING LIES
Michael Phelps
I'm doing research on Marfan Syndrome at my school and this is really helpful to show that you can still do whatever you want if you have this syndrome
UNIVERSITY OF MICHIGAN IS THE BEST
:)
You should rethink that.
You should rethink that. There is a VERY wide range of how severe Marfan Syndrome can be.
Another thing that bothered me about this article-- It's Marfan Syndrome. Not Marfan's Syndrome. It wouldn't bother me, except the peron who wrote this article misspelled a lot of other things as well. Shows how dedicated a person can be when they can't google or spell-check a damn word.
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