Diagnosed

Diagnosed today with Classic EDS. Not thrilled but part of me is so relieved to finally know what's been happening for the last 25 years. Doesn't seem like it should have taken this long for what the geneticist says is actually not that rare... :-).

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Am happy for you that is good to know what but please can you tell me about classic cuz I think I have that

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I understand completely the frustration of getting a diagnosis so late. I just got my HEDS diagnosis in May and I'm almost 24. The geneticist says I was a textbook example and had tons of signs but no doctor bothered looking or putting it together. It may have taken some time but now you can focus on learning about EDS and not worry about what it could be. At first it's very weird having a diagnosis but eventually it's sort of freeing because you finally have an answer to why there are problems. Being young it can be hard to handle having problems and many doctors don't take you seriously but now you will have something to point to and somewhere to go from. The diagnosis may has came later than you hoped but at least you have one now! :)

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Thanks so much. Actually, I am approaching 50 yrs. and have been dealing with health issues for years and basically told by doctors and family that it was all in my head. Thankfully my new PCP believed that something was going on and pushed me to keep pushing for answers. I only became aware of EDS because of my recent Chiari diagnosis and came across in my reading and I only kept pushing for the sake of mh children. The diagnosing geneticist said I too, am "textbook", a "classic" case of classic EDS and was shaking his head as we explained about all the many Dr's visits and missed diagnosis. I actually look very Marfan like so you'd think that would be a clue. Anyway, I'm thankful to finally have a name for it and (somewhat!) know what to expect. Mohaa, there is a list here of each of the types but I think what led the Dr. to classic was my skin - fragile, poor wound healing, poor surgical stitching as well as having Mitral Valve Prolapse, more common in classic than hypermobile. (I think; I'm no expert :-)).

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Hello Mohaa,

You can look through this article for more information on Ehlers-Danlos Syndrome, Classic Type http://www.ncbi.nlm.nih.gov/books/NBK1244/

Gentle hugs...

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Congratulations on an accurate diagnosis! What a relief to finally feel validated by the medical community. Guess what? You're NOT crazy....you have EDS! Welcome to the club....officially. :)

Unhinged

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That is wonderful news that you were finally dx! I was not dx until August 30, 2011. I knew that I had it 5 years prior to the official dx. It certainly was vendication and explained everything I had been through. I am like you I read were people are dx much earlier than I was. It was'nt until my hip surgeon said "I feel strongly that you have EDS." If it were not for that and a push to get a dx I probably would not know.

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