Living with Marfan Syndrome

David Berger knows a lot about Marfan Syndrome. His brother had it. His father had it. And now, at age 59, David has it. But he doesn’t let it get him down. With the love and support of his family, David is learning to live with his condition, while sharing his experiences to help others.

This is David’s story.

My story begins with a diagnosis of Marfan syndrome, a rare and usually inherited genetic disorder that causes the connective tissue (the fibers that support and anchor your organs) to weaken. People with Marfan syndrome are usually tall and thin with disproportionately long arms, legs, fingers, and toes.

The damage caused by Marfan syndrome can be mild or severe. If your aorta (the large blood vessel that carries blood from your heart to the rest of your body) is affected, the condition can become life-threatening. This disorder can also cause damage to the heart, blood vessels, bones, joints, and eyes.

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About Marfan Syndrome

Learn more about this condition on the medical conditions page.
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Marfan syndrome can be hard to identify and people living with it may exhibit different combinations of features, some of which require special tests to detect and some of which are life-threatening.

Because this complex condition requires a specialized and experienced approach to care, I make sure to always wear my MedicAlert ID for Marfan’s and keep my membership up to date in case of emergency.

This disorder has taken my younger brother, who passed three years ago at the age of 51, and my father, due to suffering a brain bleed from a fall. The bleed was due to complications from blood thinners he needed to take for Marfan syndrome. Although our family name has stopped, I’m lucky to have the support of my sister, my only remaining blood relative. And Luckily my father married a few times and I’m very close to my stepmother and stepsisters.

I just had my third open heart surgery to repair a damaged aortic root. I’m thankful that my surgery was a success and I am eternally grateful for the love and support that surrounds me.

I’m hoping that sharing my story will spread awareness about Marfan syndrome and encourage others with it to safeguard their health, well-being, and peace of mind with a MedicAlert membership and medical ID

Read on to learn more about Marfan syndrome and how MedicAlert can help protect you 24/7

I am hoping that sharing my story will spread awareness about Marfan syndrome and encourage others with it to safeguard their health, well-being and peace of mind with a MedicAlert membership and medical ID.

Who’s at Risk for Developing Marfan Syndrome?

Marfan syndrome affects approximately 1 in 5,000 people in the U.S. today. According to the Texas Heart Institute, roughly 50,000 people nationwide are diagnosed with the condition each year. In around 75% of cases, Marfan syndrome is inherited from a parent. In the other roughly 25% of cases, the cause is unknown.

While Marfan syndrome is a complex condition that can be challenging to live with, it can be managed. Thanks to recent advances in the diagnosis and treatment of Marfan syndrome, people like David are living longer and more active lives.

About Marfan Syndrome

Marfan syndrome (also MFS, Marfan’s syndrome, or Marfans syndrome), is a condition that affects the body’s connective tissues. Connective tissues support, protect, and give structure to body systems such as the skin, eyes, bones, blood vessels, heart, tendons, lungs, and cartilage. When the body’s connective tissues are abnormal, it can cause a number of unusual features and symptoms.

Some characteristics of Marfan syndrome include inordinately long arms, legs, and fingers, extreme nearsightedness, and an abnormally curved spine. In addition, MFS can cause crowded teeth, breastbone abnormalities, and flat feet.

Tests used to diagnose MFS may include chest x-ray, electrocardiogram (ECG), echocardiogram (Echo), computed tomography (CT), magnetic resonance imaging (MRI), and transesophageal echo (TEE).

Managing MFS

There is no cure for Marfan syndrome. However, the condition can be controlled with medications, surgery, and healthy lifestyle habits.

Today’s first-line medications for MFS include beta-blockers and angiotensin receptor blockers to help slow the enlargement of the aorta (the largest artery in the body). Surgery involves replacing the aorta and aortic valve or valve-sparing aorta replacement.

Healthy lifestyle habits can help support the bones and connective tissues of the body. Low-intensity exercise (no contact sports or heavy lifting), eating a healthy low-fat diet, and keeping weight within the healthy range can have a powerful impact on the quality of life for people living with MFS.

Facts About
Marfan Syndrome

People with Marfan syndrome tend to be very tall and thin.

Anyone can be born with Marfan syndrome.

A person with Marfan syndrome has a 1 in 2 chance of passing it on to their child.

Aging with Marfan Syndrome

Over 70 years ago, the life expectancy for people living with Marfan’s syndrome was around 45 years. According to Mass General Brigham, today, many people with the condition can expect to live into their late 70s. This is the average life-expectancy in the U.S. overall.

People living with or without Marfan syndrome will likely experience joint pain, eye, and heart problems as they age. Simply put, anything can happen to anyone at any time, and there are no guarantees when it comes to the aging process. This is why it’s important to see your doctor regularly and adopt healthy lifestyle habits.

People living with a condition such as MFS must be monitored closer. Equally important is the fact that they must take extra precautions to protect themselves in everyday life. This means wearing a medical ID for Marfan syndrome. MedicAlert can help.

Why a MedicAlert ID is Important

If you are living with Marfan syndrome, a MedicAlert medical ID can play an important role in managing your condition. In fact, MedicAlert can be by your side 24/7, providing assistance and protection in everyday life. This is especially important in the event of an accident or other medical emergency.

Medical IDs for Marfan syndrome can connect health professionals to the information they need to assist individual’s living with this condition. This is true whether the person has been in an accident or during a routine doctor’s visit. Custom engraving on all our products allows your vital medical details to be communicated to first responders and hospital staff immediately. This can save precious time where it counts.

Add a protection plan, and you’ll have an additional layer of protection. A MedicAlert ID and protection plan can be your voice if you are unable to communicate critical information about your condition to first responders, ER doctors, and hospital staff in an emergency. Our Advantage Plus protection plan is the smart choice for people living with Marfan syndrome.

Advantage Plus provides:

  • 24/7 emergency response team to relay vital information to first responders, ensuring safe and accurate care.
  • Designated physician and emergency contact notification.
  • Digital health profile of your condition, medications, surgeries, and risks – all in one place.
  • Personal document storage.
  • Printable detailed profile for your medical appointments.

With the support of MedicAlert, healthcare teams, and family, people living with Marfan syndrome can lead a long, active life. Learn how.

Sharing member stories serves to inspire the MedicAlert team and educate others. Our members continually impress and humble us. At MedicAlert, we are grateful that our members entrust us with their medical information, so we can continue to fulfill our mission and do the work we set out to do: protecting and saving lives by communicating crucial health information when it matters most.

While our members are unique in their own right, with varied medical conditions and concerns, we consider each one to be part of a collective family. At MedicAlert, we provide the ties that bind, connect, and protect. Please take a moment to read other member stories.

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