I was diagnosed with Marfan syndrome in 2002

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I've noticed not many people or even Doctors are aware of what Marfan Syndrome is. Marfan syndrome is a genetic disease that causes weakness in the connective tissue. Unfortunately I was diagnosed though genetic testing in 2002. My father and grandfather also had marfan. As long as I can remember I have been dislocating joints and parts of my body ache and hurt so bad on some days that I dont want to crawl out of bed. I am now 28 years old and about to have yet another surgery for a dislocation thanks to this genetic nightmare. Last Thursday night my knee buckled underneath me and my patella (knee cap) went to the side of my leg. I was taken to the emergency room where I was treated like crap. I explained to the triage nurse, resident doctor and intern that I had Marfan's and they looked at me like I was speaking a different language. The doctor sat there and told me that there was no dislocation, no broken bones, nothing that he could see wrong. He gave me a referral to Orthopedics, put my leg in an immobilizer and discharged me. Well, Monday I was seen in Orthopedics and was informed that I am likely going to have surgery to replace my kneecap and fix the MCL. So much for not having anything wrong, right?! I am a member of the National Marfan Foundation, but I havent really found anyone else who has the problem I do other than family. Does anyone know anyone or maybe is a person who is living with Marfan?