Marfan's Syndrome: Michael Phelps' Blessing or Curse?

Published by Julie Kent on August 14, 2008 

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 hyper-mobile 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."

[Pg. 66, Michael Phelps: Beneath the Surface]

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.