10 Famous People with Marfan Syndrome

Marfan syndrome¹ is a disorder of connective tissue. There is a role of connective tissue in every part of the body. Connective tissue provides strength and flexibility to muscles, bones, ligaments, and blood vessels.

Because connective tissue is everywhere in our body, Marfan syndrome is also a connective tissue disorder². Therefore people with Marfan syndrome have abnormalities related to the heart, eyes, joints, blood vessels, and muscles.

People with Marfan syndrome have two primary problems. The first is related to the eyes, and the second to the aorta. One or both eyes may have dislocated lens called ectopia lentis³. An aortic aneurysm⁴ occurs due to the weakening and stretching of the aorta.

There are bulges present in the blood vessel wall known as aneurysms. Aorta stretch to a level that causes the aortic valve to leak. This causes the tearing of the aorta wall. This is why Aortic aneurysms are life-threatening.

There are many famous Marfan syndrome sufferers. We will deep dive into the lives of 10 famous people with Marfan syndrome and dig out the impact of Marfan syndrome in their lives.

How the human body presents with Marfan disorder

Marfan Syndrome Affects the Face:

The face is long and narrow. Just by looking at the face, a message can be guessed about the person affected with Marfan syndrome.

Marfan Syndrome Affects Body Proportion

Marfan syndrome tends to give a unique body proportion like:

1. Long head and thin nose
2. Long slender fingers and long arms.
3. Patients with Marfan syndrome and long and flexible fingers
4. Tall body
5. Thin extremities
6. Curved spine
7. Joint dislocated
8. Flat feet

Eye Problems in People with Marfan Syndrome

• The shape of both eyes is different.
• The lens of the eyes is away from their position.
• Nearsightedness
• Blurring of object

Heart Problems in People with Marfan Syndrome

People with Marfan syndrome can have heart problems such as mitral valve prolapse, aortic valve regurgitation⁵, and palpitation.

Features can be summarised as follows:

• Aortic aneurysm
• Cardiomyopathy: The heart enlarges, and chances of heart failure are increased.
• Abnormal heart rhythm or arrhythmia
• Intracranial bleeding is also seen in people with Marfan syndrome issue

Respiratory Problems in People with Marfan Disorder

• Emphysema
• Asthma
• Lung collapse

Skin Changes in People with Marfan Disorder

• less stretchy skin
• stretch marks without weight changes

Famous People with Marfan Syndrome

1. Abraham Lincoln

We all know about the famous Abraham Lincoln. He was the 16th President of the United States of America. But do you know that it was believed that he had Marfan syndrome?

Abraham Lincoln’s lean stature points towards the possibility of Marfan syndrome. Given Lincoln’s unusually tall height and unusual physical gifts, Dr. Abraham Gordon proposed in 1962 that he had Marfan syndrome. His normal visual acuity and unremarkable cardiovascular history raised objections to this hypothesis.

Now let’s talk about the health and trauma of Abraham lincoln. When he was 9 years old, a horse hit him in the head. He suffered from malaria twice in 1830 and 1835.

He had multiple phases of emotional trauma and depression during his life.

1.1. Lincolns Mercury Poisoning

In Wikipedia, it is mentioned that Abraham lincoln took blue mass pills which contained mercury. He suffered from mercury poisoning. There is a book written on this, Abraham Lincoln’s Blue Pills: Did Our 16th President Suffer from Mercury Poisoning?

1.2. Did You Ever Hear of Lincoln’s Sign?

In 1962, according to Lincoln’s photograph, Harold Schwartz said he might have aortic insufficiency. This is known as the Lincoln sign.

2. Robert Johnson

Now let’s talk about the famous blues musician Robert Johnson. This talented personality had many impressive skills, like singing, guitar playing, and songwriting.

Words cannot describe how talented and multifaceted Robert Johnson was.

He died at the young age of 27 years. His death certificate only had the date and location, but no official cause was listed on the death certificate.

It is said that he had syphilis contributing to his death.

Johnson died in 1938, but in 2006, a medical practitioner called David Connell said that looking at the singer’s photo, it can be inferred that he may have had Marfan syndrome. He had one bad eye and unnatural long fingers. The reason for his death may be aortic dissection.

3. Jonathan Larson

Jonathan David Larson was one of the most famous people with Marfan syndrome.

He was an American composer who wrote Rent and Tick, Tick …….Boom! These strongly focus on multiculturalism, homophobia, and substance use disorder.

All his compositions are incredible, and he was awarded many times for his outstanding work.

His death took place 10 days before his 36th birthday.

An autopsy revealed that the cause of his death was aortic dissection.

3.1. How Did Marfan Syndrome Consume This Talented Personality?

It is said that Larson was suffering from severe chest pain and shortness of breath a few days before his death. The diagnosis was not confirmed for aortic dissection. Even after a chest X-ray and ECG, the condition was misdiagnosed as influenza or stress.

His death is a major issue of medical malpractice. New York State Medical Investigators concluded that cardiac surgery could have saved Larson’s life if the aortic dissection had been diagnosed in time.

The National Marfan foundation claimed that Larson’s death was due to undiagnosed Marfan syndrome.

4. Vincent Schiavelli

He is recognized as a sad-faced actor. He is one of those famous people with Marfan syndrome.

Vincent considers himself lucky that he came to know about this rare disease on time, as many people with Marfan syndrome are unaware of the condition till they die an early death in their 30s due to a sudden heart attack.

Schiavelli learned about Marfan syndrome at the age of 9 years, when his eye specialist detected dislocated lens.

This doctor knew about the connection between dislocated lenses and Marfan syndrome because he was researching Lincoln, who is believed to have Marfan syndrome. This Knowledge enabled Schiavelli to get proper preventive measures. He got his heart surgery done. Today he is in very good health condition.

It is so proud that he is a spokesman for the National Marfan foundation.

Schiavelli has a different outlook on Marfan syndrome. He says one can’t even realize how broken he was, but since he had heart surgery, he feels great with his energy preserved.

He says what he has learned in 10 years is not to let our system get tired. The body’s connective tissue is not much as it normally should be, so this is called scaffolding Schiavelli.

People with Marfan syndrome describe the symptoms in very different ways. Tall and thin, long fingers and feet, crooked spine. The main danger comes from the heart. The main blood vessel aorta grows and grows and reaches a point where it bursts.

Your own body explodes and finishes your life. This is for those who are unaware that they have Marfan syndrome.

5. Niccolo Paganini

Now let me tell you a unique story of Niccolo Pagnini. He was a famous violinist. It is said that he is one of those people with Marfan syndrome who should have lived. Niccolo had a very unique relationship with the guitar. He used to do more intimate concerts rather than public concerts.

He is the pillar of modern violin technique. If modern genetic tests had been available at that time, it might have been possible to find out whether it was Ehler-Danlos syndrome or Marfan syndrome exactly.

This famous person was known as a demon violinist. He had an extraordinarily unique talent. His joints were so flexible that he played the violin in a very unique way. His long slender fingers granted him the unique gift of playing the guitar.

Besides Marfan syndrome, his frequent concert schedules and lifestyle were also very extravagant. In such a way that he could not pay attention to his health.

He first suffered from syphilis in 1822. He was physically and psychologically affected when he took mercury and opium as remedies. In 1834, he was treated for tuberculosis.

Paganini had to cancel his concerts many times due to his health. He finally put a pause on his career and returned to Genoa.

Some people believed he wanted to keep his music techniques secret, but he did many publications about his techniques and even reached students, of which 2 students succeeded.

Shiavelli said that Paganini’s pattern of violin technique was so challenging and difficult that, to date, no one could play it like him.

6. Michael Phelps

Michael Phelps undoubtedly is one of the most famous people with Marfan syndrome.

Ha has a Marfan syndrome gift due to their impressive height and formidable arm span. His knees are extraordinarily flexible and hyper-mobile.

In an interview, he said that genetic syndromes like Marfan syndrome, which damages our heart valves and aorta, reduce life expectancy. You are at risk if you have long arms and tall height.

He further says that his wingspan is more than his height. Earlier he could not understand why the doctors were paying so much attention to this measurement. They just gave me the idea that I am a younger athlete and should get my electrocardiogram done to get the status of my heart health.

He is actively involved in routine regular check-ups; fortunately, everything is fine. He has a good heart shape, clear aortic routes, and strong body tissues.

7. Bradford Cox

http://www.youtube.com/watch?v=CULxT8Et6RY

We know Bradford James Cox as the lead singer of his rock band Deerhunter. His first big screen movie was Dallas buyers club, one of the most widely acclaimed movies.

Bradford Cox is a famous singer born with the genetic disorder Marfan syndrome. He had to drop out of high school when he was a teenager, and his childhood was mostly lonely due to his parent’s divorce.

He had very few friends, so his inclination toward music grew, and he recognized his potential. Cox has always differentiated his music since he was 10 years old. For this purpose, he has used the name ” Atlas Sound.” His rock band Deerhunter is a very famous musical band.

Cox’s taste in music is the answer to his life and a reflection of his mental status. This musical genius explains that Marfan syndrome began to affect his body when he was 10 years old visually. This is for the first time that he feels awkward.

7.1. Those Emotional First Lyrics of Cox

The first album of Cox under his brand studio Atlas Sound was Let the Blind Lead Those Who Can See but Cannot Feel. The lyrics of this album were mixed with a lot of criticism, but many people traced his emotions.

Cox emotionally presents the cascade of his Marfan syndrome journey. The album is that part of his life that he has lived because of Marfan syndrome.

Cox explains that he faced many challenges due to Marfan syndrome, such as child abuse, drug addiction, and hospitalization.

This gives us an idea of how challenging Marfan syndrome’s life is, especially in the early years. Today Cox is 40 years old and living his life in his own way. He is very fond of music.

8. Egyptian Pharaoh King Tutankhamun

He was an Egyptian pharaoh king. When he died at the age of 19 years, historians thought that he had early death due to his family history.

For many years, CT scans and DNA tests were done on his mummy. The results reveal that he was a victim of Marfan syndrome. He had a tall height, a curved spine, a flat foot, and long extremities. His father and mother also had similar features.

9. Flo Hyman

Flora Jean Flo Hyman was a volleyball player in Japan.

It is said that her death was due to a heart attack. But her family did not accept this and requested her autopsy in California.

The autopsy report rejected the possibility of a heart attack. She had a healthy heart but had undiagnosed Marfan syndrome. There was a small spot less than an inch above her heart. At this point, there was a burst in the artery.

The cause of her death was fatal aortic dissection due to Marfan syndrome.

She had many physical features of Marfan syndromes, like long arms and large hands, height, and near-sightedness.

There is still a hopeful and positive side to this incident. The doctors found that her brother had Marfan syndrome and was treated with open heart surgery.

Experts say she was lucky to be able to play a sport like physically demanding volleyball for so long, even though she had Marfan syndrome.

10. John Tavener

John Tavener was an English composer who mostly focused on the religious chorus.

His famous work includes The Lamb, Song for Athene, and The Protecting Veil. Song for Athene was sung at Princess Diana’s Funeral.

He was diagnosed with Marfan syndrome in 1990. He always had heart-related problems throughout his life. In his thirties, he had a stroke, and in the Forties, he got his heart surgery done and his tumor removed. He had two successive heart attacks, which made him very weak.

He died at the age of 69 years.

Diagnosis of Marfan Syndrome

Diagnosis of Marfan syndrome is very important as it affects many body tissues or, more clearly, almost all the body’s cells and tissues. A complete healthcare team performs a very effective diagnosis and treatment plan to prevent the complications of Marfan syndrome.

People with Marfan syndrome are living a healthy life just because they were timely diagnosed and treated.

Tools to Diagnose Marfan Syndrome

• Chest X-ray
• Electrocardiogram
• Echocardiogram
• Transesophageal echo
• Magnetic resource imaging
• Computed tomography
• Genetic testing

Importance of Treatment of Marfan Syndrome Patient

Treatment of Marfan syndrome extraordinarily improves life expectancy.

A proper treatment plan comprises:

• Beta-blocker or calcium channel blocker based on the history of asthma
• Angiotensin receptor blocker to treat high blood pressure and heart failure
• Cardiac surgery

Life Expectancy in Marfan Syndrome

The life expectancy of people with Marfan syndrome has improved since 1970. Earlier life expectancy was 32 years, but if diagnosed at a young age and controlled for risk factors, the progression of the disease can be stopped.

The cautious clinical treatment can improve the life expectancy of Marfan syndrome-treated individuals by 72 years.

An Inspirational Source

Just be you……

Watch the video below to gain positive insights from practical life.

A famous life with Marfan syndrome…

A Message to A Beginning and An End

This is a video by the Marfan foundation for aortic surgery.

In this article, we gave information about the life of famous people with Marfan syndrome.

We read how Marfan syndrome can be complicated, but the main focus is on the message this article wants to give to all the people reading this.

By reading this article, you can get inspirational messages from the life of these famous people with Marfan syndrome.

Key Points:

Take away points from the life of famous people with Marfan syndrome

• If your fingers are longer than normal and you have longer arms with large arm lengths and tall height, you should get information about your heart health by getting your ECG done.
• People with Marfan syndrome have slender and long noses.
• If you have been diagnosed with Marfan syndrome, then your siblings should also be checked up so they can be diagnosed on time with a possible treatment.
• People with Marfan syndrome are extraordinarily talented. For example, we read about those people who are Olympic silver medalists, Famous musicians, and violinists.
• People with Marfan syndrome love music.
• Many people with Marfan syndrome have achieved a normal life expectancy through timely heart surgery.
• If someone has been diagnosed with Marfan syndrome, they should go for routine checkups and consult cardiologists.
• Save heart, save a life.
• Undiagnosed Marfan syndrome leads to untimely death.
• Speak to those who have the same disorder and experienced Marfan disorder.

1. Pyeritz, Reed E. “The marfan syndrome.” Annual review of medicine 51.1 (2000): 481-510. ↩︎
2. McKusICK, VICTOR A. “The cardiovascular aspects of Marfan’s syndrome: a heritable disorder of connective tissue.” Circulation 11.3 (1955): 321-342. ↩︎
3. Nelson, Leonard B., and Irene H. Maumenee. “Ectopia lentis.” Survey of ophthalmology 27.3 (1982): 143-160. ↩︎
4. Mathur, Atul, et al. “Aortic aneurysm.” Journal of translational internal medicine 4.1 (2016): 35-41. ↩︎
5. Akinseye, Oluwaseun A., Aradhana Pathak, and Uzoma N. Ibebuogu. “Aortic valve regurgitation: a comprehensive review.” Current problems in cardiology 43.8 (2018): 315-334. ↩︎

Last Updated on July 22, 2024 by Sathi Chakraborty, MSc Biology