MARFAN SYNDROME - Top 10 Famous People with Marfan Syndrome

Article by supriya jha

Syndromes and disorders have always been an interesting part of the biological world. The kind of sea changes that take place inside the human body due to the rupture of just an extra cell or tissue really fascinates us to get deeper into this domain and study its root causes as well as diversity. However here we are talking about one such syndrome which is known as ‘Marfan’s Syndrome’. Now the first question that is quite obvious to sprout in your mind is, ‘What is Marfan’s Syndrome?’ Well before that I would like to explain why it is named so. It is named after Antoine Marfan, a French pediatrician who first described this condition in 1896. It is basically a genetic disorder of the connective tissue which affects smooth muscle development and has serious complication over heart valves and aorta (You can read more details about this syndrome here).
What are the main traits of this syndrome? Well, people having Marfan syndrome are unusually tall with long limbs and fingers. Though it cannot be diagnosed accurately on the basis of physical appearance, DNA tests confirm whether there is some kind of mutation in the FBN1 gene on chromosome 15.

So here we have a list of 10 famous people who have/had this syndrome during their life:

10. ROBERT JOHNSON

He was a famous ‘Blues’ guitarist who died at the young age of 27. There were rumors that he died of pneumonia, syphilis, poisoning etc. But the actual reason behind his death was severe heart complications. Also his unique way of playing guitar was because his fingers were more flexible than that of a normal person’s. This condition is known as arachnodactyly or loose joints. The most serious effect of this syndrome is over the cardio-vascular tissue which also includes fluctuations in heart palpitations.

9. VINCENT SCHIAVELLI

The specialty about him was that he was one of the first famous people to have been diagnosed with this genetic defect. He was a famous American actor, who died in the year 2005 because of this disorder. One of his classic movies which has been my all time favourite is ‘One flew over the Cuckoo’s nest’. His lungs got affected due to which air escaped from a lung thereby causing contraction and collapse ultimately leading to pain and shortness of breath. He was also a member of the NMF (National Marfan Foundation) which is an organization to help people affected with this disorder.

8. FLO HYMAN

She was an American volley ball player and Olympic silver medalist. Due to weakening of her connective tissue, she suffered from aortic dissection which is a surgical emergency. She died during a volleyball match in Japan in 1986 which means that she was diagnosed of her disorder only after she died. As mentioned earlier, people having Marfan syndrome are unusually tall. Similar was the case with Flo. She was 6 feet 5 inches tall and also an amazing volleyball player. Though she had a lifetime of only 32 years but she changed the definition of volleyball with her extraordinary abilities.

7. MARY QUEEN OF SCOTS

She was the famous queen of Scotland who died of rheumatoid arthritis. She also had an unusual height of 5 feet 11 inches and was exceptionally beautiful. She ruled for almost 25 years despite being affected by this disorder. A significant figure in history and also popular for her physical appearance she had to spend several years of her life in captivity. At the tender age of six days she inherited the throne because she was the only survivor from her family. She had long fingers and delicate beautiful hands. But after a particular stage her connective tissue began to rupture. A figure of utter bravery and confidence she was a beheaded for planning conspiracy to kill Queen Elizabeth.

6. TUTANKHAMEN

He was an Egyptian pharaoh. This genetic disorder had been continuing in his family since generations. Tutankhamen died at a tender age of 17 years because he had a curved spine. His father had unique physical characteristics which made him look quite feminine. Also his mother had several traits of this syndrome. Though Tutankhamen’s death has been a mystery for a long time but scientists suspect this might be the reason since this was a family trait and many females in the family had long limbs and fingers. He was 1.65m tall and is quite famous for his mysterious death.

5. JONATHAN LARSON

He was an award winning playwright who died in the year 1996 because of aortic dissection. His disorder was diagnosed at a very later stage. He was a very classic case of undetected Marfan syndrome. He received three Tony awards and one Pulitzer Prize for his rock opera. Larson was also a famous music composer but he became famous only after his death. During Princess Diana’s funeral his cello piece ‘Song for Athene’ was played. He kept complaining of regular chest pains but nobody could suspect that he had Marfan syndrome.

4. NICCOLO PAGANINI

A very famous Italian composer and violinist had complete traits of this disorder. He was extremely tall and thin and his fingers were very disproportionate to his palm size. He died due to the paralysis of his laryngeal nerve. During his death he lost his voice and many people believe that his unusual long and flexible fingers were the reason behind his extraordinary ability to play violin. He relatively had a longer life span and his abnormal joint flexibility contributed in his work sphere as well.

3. JOHN TAVENER

John Traverner was a very famous British classical composer. He had Marfan syndrome which was diagnosed when he had spent 46 years of his life struggling with it. Many members of his family were suffering from this disorder. His brother and his two daughters were also among them. Traverner has publicly spoken about his disorder and how it affects him. He needed an aortic root development in 1991. One impressive thing about him was that he had a very positive spirit towards life and he believed in public awareness of the disorder.

2. BRADFORD COX

He is the lead singer of the band ‘Deerhunter’. Moreover his unique physical appearance added to the weird kind of music his band produced. He has spoken in media about his disorder and he was diagnosed of this disorder when he was a child. According to Cox, “Besides its obvious physical effects, it affects your personality because a lot of your personality affects your self- image”. His band shows an experimental blend of electronic psych rock. He has turned his inherent weakness as his strength and the lead singer’s appearance complements the music of the band perfectly.

1. OSAMA BIN LADEN

Well this person needs no introduction since we all know who he was. Born in a family of 16 children, he was 6 feet 6 inches tall. His long and bony face with long fingers and arms do point towards to the fact that he had this disorder. Despite of being so tall he weighed only 160 pounds and had difficulty in walking which means he had some spinal problem which is again a symptom of Marfan syndrome. However his disease could not be diagnosed because he stayed in hills and jungles as a fugitive. He is one of the most famous Marfan syndrome sufferers. No deny he has been famous for all the wrong reasons but what we know for sure is that continued having certain health problems because of this disorder.

Well this list gives us an example of such people who have learnt to live with their disabilities and yet excelled in life. The way we look at things in life also makes a big difference since human life is full of complexities, be it physical or mental. Life has several good things in store for all of us. If these people mentioned above had given up in the very beginning, do you think they would have been famous in whatever they did? Of course not. Thus we should learn to develop a positive attitude to deal with adversities in life instead of getting discouraged and demoralized.