bpartoens’s Profile
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bpartoens
is feeling OK
About Me
I used to be a Chef,until i could no longer mover my shoulders or stand because my hips dislocated more than the every other step they used to. i had numerous surgeries and i was told by surgeons that i had just plain old "crappy body tisue'. Not until my 17 year old daughter was told by a md. that it looked like she had eds, did i even know that eds was a real thing. My mother had symptons like me , but she died from when her her vascular system gave out-she was in her 40's. I was just a kid .
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I’m With You
How are you? How's your daughter? I'm just checking in on my friends and would love to hear from you. By the way, I have the hypermobile type of eds and the only tx that they told me about was to take Vit.C to try and help keep the collagen strong. I have all they of my girls taking a multi-vitamin with an extra dose of Vit.C, I figure it can't hurt and I'm sure my youngest who's 20 has eds. Well hope to hear from you, take care!
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I'm just finding my way around this site and read your profile, I too was only recently diagnosed with eds and my first thought was "I'm not crazy", some of the other Dr's I had seen had me feeling like I must be making these symptoms up and I even had one Dr say "you need to get off the pain meds and take up aerobics". Later I thought it's pretty bad when receiving news that you have a rare genetic disorder your first reaction is relief, for me any way I was releive that I wasn't crazy and I now had some information and could at least understand a little better what was happening to my body. Well I didn't mean to ramble on, I just wanted to say Hi and I hope to hear from you.Kon
I’m With You
I understand trust me i am 22 and i have eds type 3/ maybe type 4 too. I am here if you need me ok .
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Close Ehlers-Danlos Syndrome
My first surgeon told me it was it my head,the pain specialist he sent me to said, oh my God, how many joints dislocate on you> She sent me to some one else, who operated said I had crappy tissue, at the same time my 17 year old daughter had symptons, and the dr. said i had crappy tissue and sent me hoem to die. My husbands job had a self funded health plan, and they said i was to expensive to issure(poor life style choices), so the fired him when they refused to insure me or give me care.
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