I know Ehlers-Danlos is genetic, but is it possible to have hyper-mobility type with family history of just benign joint hyper-mobility syndrome? Most of my family members on my Dad's side have benign joint hyper-mobility syndrome, but mine's always been a lot more severe and I've had a lot of pain and subluxes which never happened with any of my family members(as far as I know.) It's recently been getting a lot worse, so I'm wondering if it might be Ehlers-Danlos, as I have other symptoms too.
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replied October 4th, 2012
It is very likely that it is eds hyper mobility type. I have it. I was diagnosed almost 6 years ago when I was 14 I'm 19 now. I was also having a lot of joint pain I was on a swim team for 13 years and for years I would tell my dad that my knees and shoulders were hurting me and moving weird and almost every day when i was older but all he ever told me was to suck it up its nothing but in the middle of our championships I was swimming( i don't know if you know if you know anything about swim strokes) butterfly in my main event and my shoulder dislocated and I kept swimming with a dislocated because if I stopped I would get disqualified and my dad and coaches would be mad so I finished the race but I had to be lifted out of the pool and was screaming and that's when my dad knew I was telling the truth when I came to him all those times saying something was wrong. My mom took me to the doctors the next day and she referred me to Cincinnati children's hospital to see a genetic specialist dr tinkle for possible ehlers danlos syndrome we went a few weeks later and sure enough I have it. But you should go on the Internet and google the doctor tinkle ehlers danlos body checker test or something along those lines. It is pictures of drawings of a hand elbow finger skin foot I think and knee those are going to be things they will have you do if you the hyper mobility type. I hope I helped. If you have any more questions just ask me I'm pretty much an expert in it now I have two books by Doctor tinkle also on it. Good luck.
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replied March 15th, 2013
I have zero family history (that I know of)...and I have a very severe case of EDS-Hypermobility, along with Ankylosing Spondylitis/Sacroilitis/tilted pelvis/bilateral hip labral tears. I don't know what I did to deserve this horrible pain. No doctors are helping me either and I've seen soooooo many in the past 5 years. They all are completely astonished by my MRIs (how much inflammation I have in my SI joints and how tilted my pelvis is) and even more astonished when I show them my ROM and how hypermobile I am in every joint. "wow, there's no doubt you're in horrendous pain", they all say. Then they label me a drug-seeker and send me out the door with either a PT-referral (I've been in PT for over 4 years and it's only made things worse, and it's ALL THE SAME.) or tell me to go to pain counseling. UM THERE IS NOTHING WRONG WITH My BRAIN. I HAVE OBVIOUS PHySICAL REASONS FOR PAIN. Sorry, doctors have been no help to me lately and now I'm venting Smile
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