The month of February is extra important to me as it marks the month of the heart. I have been living with Marfan syndrome for 30 years; however, I’ve only been diagnosed for 22 years. I try every day to share my story and knowledge about the condition. The more we speak up, the more people we can be helping. Here is my story.

A Marfan or related disorder diagnosis can be elusive for an athlete, particularly an athlete who does not display the typical cluster of characteristics.

After Michael J. Fox was diagnosed with Parkinson’s, I casually commented that the Marfan community needed a celebrity of its own to make Marfan syndrome something everyone had heard about. I was wishing for a world where my rare disorder didn’t seem so rare—or as disordered as it felt sometimes.

Medicine is constantly changing, and often faster than doctors can keep up. Your doctor has to periodically update her knowledge, but she also has to see hundreds of patients a week, which means she could be a little behind the times regarding new advances or the details of all illnesses and syndromes.

In early January 1985, Dr. Reed Pyeritz, of Johns Hopkins Hospital in Baltimore confirmed, through body measurements and imaging tests, my wife, Paula’s, very recent suspicion that she had Marfan syndrome. Paula was thirty-three years old and had been seeing doctors for a heart condition since she was nine years old.