I like to think that I’m a fairly positive person, especially when it comes to my Marfan diagnosis. It has taken a long time to get here. Not every day is a good day, but, overall, I see my Marfan diagnosis as something that benefits my life. Then there are my bad days. They are filled with joint pain, migraines, and sometimes the inability to get up out of bed. We all have our bad days physically, but we keep going because that’s our life.
Have you heard of CRISPR gene editing technology and wondered if it could one day be used to treat or even cure Marfan syndrome? Many members of our community have asked about CRISPR so we wanted to provide an overview of this type of research and what its potential might be for treating Marfan and related disorders.
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.