I was diagnosed w/EDS type 3 in 2002 @ age 29, after being misdiagnosed w/Fibromyalgia for over 5yrs. I've had numerous surgeries on my knees for dislocations, & finally they removed them both. I live in chronic pain, & have since around 1998, just not to the severity it is now. My question is that when I began to walk, I walked extremely pigeon toed & w/my rear up in the air, continue to walk that way. I cannot sit "Indian style", but rather w/my legs bent in a W position, w/the calves of my legs lying along side my outer thigh area. My mom says that when I began to walk & I was so obviously extremely, "in toeing", as she calls it, the pediatrician told her my hips hadn't properly rotated & to get me ASAP into sports which would help my feet straighten out. So I started skating & skiing @ 3!!
My problem is my legs physically do not bend the normal way & my right hip causes me such pain, yet MRI only shows some sort of congenital fusion of a vertebrae into hip, which the Dr's tell me shouldn't be causing any pain. So should I #1 Had braces put on my legs to straighten as a kid?#2 Can anything be done now to straighten them?#3 Can anything be done about a congenital hip fusion to reduce pain?& lastly #4 Anything I can do about no longer having knee caps? Because I dealt w/constant dislocations of my left since 1988 & I'd pop it in myself. That was until it went all the way out to the side of my leg! The pain was horrific & even after a lateral release, screws inserted, & tendons/ligaments repair, my knee cap still blew out after each one of those surgeries!! I was flat on my back on every pain pill you can think of for over 6+yrs & gained over 60lbs. And even now, I had my left one out in 2006, it hurts me every single moment of my life. I pray someday probably not in my lifetime, they find a cure for EDS, because it is one of the most severe, painful, debilitating, yet unknown genetic disorder. If it wasn't for my husband & family I would be living in a cardboard box down by the river, as I was a senior in college when the knee/back/hip/& basically complete body meltdown occurred. I was physically unable, due to the pain in the majority of my body, to even get out of my bed & put my clothes on to drive out to college. Having EDS ruined my dreams & getting my diagnosis finding out there isn't a cure nor a treatment regime only deepened my depression. My Mom & Grandmother combined have to date almost hit the $200,000 mark on me, & I owe thousands for medical bills & things my wonderfully patient, hard working, husband of 6yrs paycheck just won't cover. I had to wear a thigh to ankle knee Immobilizer on my right kneeas I had my knee cap removed 3wks after my wedding! Yes I know a pretty sad story. But in actuality, many w/EDS are MUCH worse off than me. It would help TERMENDOUSLY if my state accepted EDS as a disability, but I also doubt that will occur in my lifetime. Also the number of misdiagnosed is HUGE which only makes matters worse. I only found out because my biological father was diagnosed after having a detached retina, which is a major symptom of EDS, & he tested positive thru a skin biopsy, & when he was told if he had a daughter she needed to be taken in for testing. My paternal Grandmother unfortunately passed away from EDS, & I wondered my entire life why she had contorted feet & hands & why she never worked, but rather spent her days in her recliner & slept in her own bed. All my questions were answered the day I was diagnosed.
Thank you so very much! And please if just one person told another person about EDS, maybe our miserable genetic disorder could finally be recognized & someone could find a cure!!!
JeniferLyn. EDS...FIND A CURE!!!
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