Please Help

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 (syndrome).  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.

[selmaS]

Hi and welcome to the EDS group.

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.

   "selma"

[michelle669]

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.

[selmaS]

  I was in shock.....as I had gotten a chiari and tethered cord dx b4 my EDS  dx, and I really did not think I fit the criteria......

The best thing u can do is find a Dr that specializes in this area of expertise... and u have basically 2 different issues like I have several ...and we need several Drs at times to take care of them.