As a direct result of information disseminated by the National Marfan Foundation, I was able to diagnose myself with the condition. This information saved my life.LoveNestWeb

Marfan Syndrome is a genetic disorder of the connective tissue. People with Marfan Syndrome tend to be unusually tall, with long limbs and long, thin fingers. Because connective tissue is found throughout the body, Marfan Syndrome has a range of symptoms and affects individuals differently. The most serious complications are defects of the heart valves and aorta.

After convincing my doctor that I had the condition, I was given an echo cardiogram and was diagnosed with an enlarged aorta. I had preventative surgery to repair my aorta and replace my aortic valve. My mother was not so lucky. She was too old to have the surgery by the time she was diagnosed. She passed away from an aortic dissection in 2011.

Each year, the National Marfan Foundation has a HeARTworks Gala with an an auction to raise money for research and education about the condition. So far, I have contributed three heart sculptures for the event. This year, “The Love Nest” is one of three chosen for the auction. Starting bid, $500.

Check out the auction booklet here.