The Marfan Foundation

“We save and improve lives of people living with genetic aortic and vascular conditions.”

The Marfan Foundation drives research, education, and support – and builds community – to improve outcomes, save lives, and empower all people to thrive who are living with Marfan, Loeys-Dietz, Vascular Ehlers-Danlos syndrome and related genetic aortic and vascular conditions.

Support the Cause Learn More

Living with Marfan

Learning you or someone in your family has Marfan syndrome can deeply affect the quality of life of the individuals and families coping with it. That’s why it’s important to get an appropriate diagnosis, learn about the recommended treatments, be prepared for surgery and take special precautions for physical activity and other situations, like pregnancy.

While living with Marfan syndrome requires multiple doctor appointments, regular monitoring, and special tests, you can live a long, productive life.

Knowing the Signs of Marfan

People are born with Marfan syndrome but they may not notice any features until later in life and some of these features can appear at any age. Some people have many characteristics at birth or as young children. Other people develop aortic enlargement, as teens or even as adults. Some features are progressive, meaning they can get worse as people age.

All of this makes it very important for people with Marfan syndrome to have ongoing monitoring, especially for life-threatening aspects of the condition like aortic enlargement. An accurate and early diagnosis helps to ensure proper treatment. Some treatments can prevent symptoms from getting worse and ultimately save lives.

Some Signs Are Easy to See

Every person’s experience with Marfan syndrome is slightly different. No one has every feature and people have different combinations of features. Some features of Marfan syndrome are easier to see than others. These include:

Long arms, legs and fingers
Tall and thin body type
Curved spine
Chest sinks in or sticks out
Flexible joints
Flat feet
Crowded teeth
Stretch marks on the skin that are not related to weight gain or loss

Other signs are harder to detect

Harder-to-detect signs of Marfan syndrome include heart problems, especially those related to the aorta, the large blood vessel that carries blood away from the heart to the rest of the body. Other signs can include sudden lung collapse and eye problems, including severe nearsightedness, dislocated lens, detached retina, early glaucoma, and early cataracts. Special tests are often needed to detect these features.

Quality of Life with Marfan

Mental Health

When you have a genetic condition, your physical health is naturally your first priority. But too often, affected people don’t tend to their mental health. This is critically important when dealing with a life-long condition. Mental health affects how we think, feel, and act. It also helps determine how we handle stress, relate to others, and make choices. It is important at every stage of life, from childhood and adolescence through adulthood.

Relationships

Relationships are always complicated. The diagnosis of a loved one with a life-long medical condition presents additional challenges. Needs and expectations change, whether the affected person is a parent, child, sibling, spouse, or partner. Communication all around is essential.

Pain Management

Marfan syndrome and related conditions are complex and progressive. People can now live a long lifespan, but it may not be pain-free due to the effects of surgery, increased stress on bones and joints, and other complications due to the diagnosis. Pain can prevent you from carrying out your daily activities – from work and school to hobbies and socializing, and even your everyday chores. There are many medical and nonmedical ways to reduce pain. While you may not be able to completely eliminate your pain, it is essential to find a combination of strategies that can help you enjoy a good quality of life.

By supporting The Marfan Foundation, you’re providing much-needed funds for the Foundation, and awareness about Marfan syndrome and related disorders. The process is fast, easy, and secure. Thank you for your support.

Published January 27, 2026 | Edited January 28, 2026

Support the Cause

Learn More

Facebook | LinkedIn

The Marfan Foundation

“We save and improve lives of people living with genetic aortic and vascular conditions.”

Living with Marfan

Knowing the Signs of Marfan

Some Signs Are Easy to See

Other signs are harder to detect

Quality of Life with Marfan

Mental Health

Relationships

Pain Management

By supporting The Marfan Foundation, you’re providing much-needed funds for the Foundation, and awareness about Marfan syndrome and related disorders. The process is fast, easy, and secure. Thank you for your support.

Walk for Victory

Connect with Community

Give Financially

Follow Us

Related Articles

Random Acts of Kindness Day At CraneWerks

Leadership Shelby County