Marfan syndrome is a genetic disorder which affects the connective tissue (the fibers which anchor and support your organs and other structures in the human body).
MS is caused by a defect, or mutation, in the gene which determines the structure of fibrillin-1, a protein which is an essential part of the connective tissue.
The severity of this syndrome varies from one individual to another, and it usually progresses over time. People with MS tend to be tall and thin, with long legs, arms, toes, and fingers.
Many people with MS have additional heart problems, like – a leak in the valve which regulates blood flow from the heart into the aorta or the valve which connects two of the four chambers of the heart.
There’s no cure for this syndrome, therefore, treatment concentrates on reducing the risk of complications and managing the symptoms. Management commonly includes the use of beta blockers, like – ACE inhibitors or propranolol.
Approximately 1 in 5,000 people have MS, including women and men of all ethnic groups and races.
Here is a list of famous people with Marfan syndrome:
#1 Michael Phelps
He is an American former competitive swimmer and the most decorated Olympian of all time. Over the years, he has won many accolades recognizing his dedication and hard work to swimming, including a few Espys and Sportsman of the Year in Sports Illustrated.
According to some sources, the Olympic swimmer and gold medalist has this syndrome, but some are contesting this since swimming at a high level with MS would be hard.
#2 Vincent Schiavelli
He was an American character actor recognized for his work on screen, stage, and television.
Aside from his acting career, he was the author of three cookbooks as well as he has written numerous articles on food for newspapers and magazines. His looks were partly the result of the MS.
#3 Sergei Rachmaninoff
He was a Russian composer and pianist, whose works are among the most popular in the romantic repertoire. In his youth, he was subject to an emotional crisis over his personal relationships, and the success or failure of his works.
His hands (most likely due to this syndrome) were the largest he had ever seen, with a stretch so wide that they “covered the keyboard like octopus tentacles.”
He is an American professional basketball player who played 2 years of college basketball at Baylor University. In 2014, Isaiah Austin had been considered a 1st-round prospect in the NBA draft until he was diagnosed with MS.
However, in 2016, he revealed that his health care specialist had given him the go-ahead to follow his dream of playing professional basketball.
#5 Bradford Cox
He is an American musician and singer-songwriter, best known as the lead singer and guitarist of the indie rock band Deerhunter.
Cox suffers from MS and once he said – “What am I supposed to do? Wear bulky clothes and be a shoegazer and stare at my feet and act all sensitive? That’s not who I am.”
#6 Robert Johnson
He is best renowned as one of the greatest blues performers of all time, a recognition which only came after his death.
His unnaturally long fingers are believed to be caused by MS, according to a 2006 article by G.P. David Connell published in the British Medical Journal.
#7 Flo Hyman
She was an American athlete who played volleyball. She was on the United States Olympic squad in 1980 and 1984. While sitting on the bench during a game, she collapsed and was later pronounced dead.
An autopsy revealed that Flo Hyman had suffered from a heart condition due to MS.
He was an Italian violist, violinist, composer, and guitarist. Some of his contemporaries frequently commented on his unique hands.
“Without changing the position of the hand, Niccolo is able to bend the first joints of the left fingers, at a right angle to the natural motion of the joint, and he can do it without effort.” – his personal physician wrote in 1831.
#9 Arik Einstein
He was considered one of the most beloved pop stars in Israel and remained at the forefront of the Israeli music scene for a few decades. Arik Einstein recorded more than 30 albums over the course of his career. He, too, was an MS sufferer.
#10 John Tavener
He was the single most popular British classical composer of the late 20th century and died at 69 at his home. He was diagnosed with MS in 1990, aged 46.
He was the founder of al-Qaeda, the organization which was responsible for the September 11 attacks on the US. Some reports state that he actually had died of MS in Dubai in July 2001.
#12 Jonathan Larson
He was an American composer and playwright renowned for exploring the social issues of addiction, multiculturalism, and homophobia in his work. He died of a tear in his aorta, believed to have been caused by MS.
#13 Troye Sivan
He is a South African-born Australian songwriter, singer, actor, and YouTube personality who has a mild MS.
#14 Austin Carlile
He is an American former musician and current baseball coach from Pensacola, Florida. He underwent a long and painful procedure to battle the adverse effects of MS.
The treatment consists of one-to-two dozen shots every seven days.
#15 Skinny Dennis
He was a country musician in the Los Angeles area. His nickname is in reference to his MS.
New Additions To The List
He was a Chicago Public Schools principal whose energy, resourcefulness and leadership inspired his students and helped engineer a school merger that suffered from MS and died in hospice care on March 5, 2018.
Peter Mayhew is an English-American actor who is best known for portraying Chewbacca in the Star Wars.
His height is not a product of gigantism. In an interview, Peter said – “I don’t have the big head, but of a connective tissue disorder called Marfan syndrome.” Peter Mayhew also added – “The most significant risk is that people can have a problem with their heart.”
Do you know any other celebrities with Marfan syndrome? Please let us know in the comments below.