Miss diagnosis!
My story is quite simple,
When i was in Middle school i was running track and Cross Country, and i was getting really good. However i realized after i ran that i would get pain in my knees. I wasn't sure if it was normal or not so i had my dad set up an appointment, the doctor i saw said that i might have something called Marfan Syndrome. I had never heard of it before, and wasn't sure at the time what it meant for me.
So I ended up getting a cardiologist appointment, and i was told that i have Marfan Syndrome, I had to quit my running. when i was in school i had to tell my teachers when i would reach my limit on activity. Kids i know thought i was lucky because i had no gym in Highschool.
It wasn't until recently that i went to the annual marfan conference. It was held in Chicago. I went and i went through the clinical appointments with the doctors and specialists. I was told by at least two of the professionals there that i probably did not have marfan syndrome. One of them said they were 99.9% sure i didn't have it, but they believe i have a related disorder known as ehlers danlos Syndrome.
I have not continued or pursued the truth mainly due to money, and besides the fact that there is on real easy way to say what you have. whether it's EDS, or Marfan Syndrome. Right now i'm just living my life the best way i can.
Find people with Marfan Syndrome through the map. Connect with them and share experiences. Join the Marfan Syndrome community.