David’s Story: Living with Marfan Syndrome

Sharing our member’s stories serves to inspire us and educate others. We are continually impressed and humbled by our members and we’re grateful that they entrust us with their medical information so that we may 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 read on to meet a member of our MedicAlert family – David.

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. 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. 

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

While Marfan syndrome can be spontaneous – meaning no one else in the family has it – it is usually inherited. 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 Marfans. I am lucky to have the support of my sister – my only remaining blood relative – and my stepmother and stepsisters, one of whom will be with me while I recuperate. 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