I am a mid 30's mother of a 6 year old boy and after a very long life of ignorant doctors and hospitals, I have been diagnosed with Ehlers-Danlos Marfanoid Syndrom. I have been looking it up. Umm... I am not sure what to feel validated, scared, angry, there are so many different emotions to many to name. I don't know. But, I do know that I don't understand it. I live in BFE. Somebody please help I don't know what or where to go from here.
I hate to say u r the first to have marfans and EDS combined....and I am not sure where BFE is, what does that stand for?...sorry....
I know there r good rheumatoid Drs out there and would suggest searching out one that specializes in EDS/Marfans to get the best care possible.Be advised, u may have to travel to get to one, but it is well worth it when it takes a life time to get a dx, I know...I got my EDS dx at age 48.....
Let me know where u live...area wise and I will see if I can offer ne suggestions.
Thanks for your post. I live in wyoming. I have done some research and it looks like maybe I have marfanoid hypermobility syndrome. May I ask did you laugh or cry when you finally got diagnosed. Im still not sure which to do.
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