By: April Dawn Shinske, Chief Communications and Marketing Officer, The Marfan Foundation

During Marfan Awareness Month 2024, members of the community living with Marfan syndrome — a genetic aortic and vascular condition that impacts connective tissue — have been sharing their diverse perspectives through short videos called #marfanrealreels. Featured across digital platforms including Instagram, Facebook, Twitter, LinkedIn, YouTube and TikTok, #marfanrealreels have reached more than 50,000 people since the beginning of February.

Community members’ stories are woven with a thread of advocacy around what day-to-day life is like, navigating health care, breaking through feelings of isolation, fostering a positive physical and mental health outlook, knowing the signs of Marfan syndrome, and coping with loss.

Betsy Matarrita, who has lived with Marfan syndrome since the age of four, shared footage of her rich life in a #marfanrealreel. “Besides countless hospital visits and surgeries, I refuse to let my diagnosis define me. I lead a fulfilling life…and I want others to know that a normal life is possible with determination and a positive outlook,” said Matarrita.  

About 1 in 5,000 people have Marfan syndrome, including men and women of all races and ethnic groups. Because connective tissue is found throughout the body, Marfan syndrome can affect many different parts of the body. Features of the disorder are most often found in the heart, blood vessels, bones, joints, and eyes. Some Marfan features — for example, aortic enlargement (expansion of the main blood vessel that carries blood away from the heart to the rest of the body) — can be life threatening. The lungs, skin, and nervous system may also be affected. About three out of four people with Marfan syndrome inherit it. However, some people are the first in their family to spontaneously have Marfan syndrome.

Early detection of Marfan syndrome is essential to fostering optimal health outcomes and longevity. The Marfan Foundation encourages everyone to know the signs.

While the experience of Marfan syndrome is different for everyone, the journey oftentimes involves countless medical appointments, limitations around physical activity, and feelings of isolation. Anna Gould’s #marfanrealreel offers comfort for those experiencing Marfan syndrome’s mental health impact.

“I conditioned myself to put on a brave face, no matter how much I was struggling physically or mentally,” said Gould when asked about growing up with Marfan syndrome. “I have since realized that it is okay not to be okay.

“It is scary to deal with a chronic medical condition…you are not alone if you are struggling. I see you,” said Gould. “I think it is so important that we talk about the mental aspect of living with Marfan syndrome.”

The Marfan Foundation offers virtual support groups to help with every aspect of the condition including seeking diagnosis, managing a new diagnosis, supporting family members, and navigating grief.

Marfan syndrome can impact entire families regardless of how many family members have the condition. KeNosha Whitehead, whose husband and four-year-old daughter have Marfan syndrome, shared a #marfanrealreel detailing the experience of Marfan-related foot surgery and recovery for her family as a whole.

“Surgical pins, walking boots, and pain meds…oh my. But witnessing [her daughter’s] grit and resilience throughout the process was one of my greatest and deepest inspirations this year,” said Whitehead.

The Marfan Foundation’s mission is to save and improve lives while creating communities for all individuals with genetic aortic and vascular conditions, including Marfan, Loeys-Dietz, and Vascular Ehlers-Danlos syndromes. During Marfan Awareness Month and every day of the year, the Foundation strives to fund research, advance treatment, build community, offer support, and empower laypeople and health care providers with life-saving education and programming that enhances care and quality of life. Learn more at www.marfan.org

The Marfan Foundation is a member of the National Health Council. For more information on NHC membership, please email membership@nhcouncil.org.