Ehlers-Danlos Syndrome Support Group

Ehlers-Danlos syndrome is a group of rare genetic disorders caused by a defect in collagen synthesis. Depending on the individual mutation, the severity of the disease can vary from mild to life-threatening. Common symptoms are unstable, flexible joints with a tendency to dislocate and subluxate, and elastic, fragile, soft skin that easily forms welts and scars.

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  • Hi, this is going to be more of a vent than anything else. I am on Medicaid; so I'm stuck with the doctors that I am assigned to. My doctor seems to have good intentions but does not believe in Ehlers Danlos. I have had trouble with my joints and oral mucosa since childhood. I have also been prone to fatigue----low stamina my entire life. My doctor thinks that all I need to do is yoga and eat a...
  • goethi1983

    moving abroad

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    Hello,I am thankful I found this site. I am interested to get some advices of other people and their experiences. My girlfriend who is Ecuadorian and our little girl of 4 both have EDS. At this moment we live in Belgium but during winter it is a hell to live here specialy for my girlfriend. On top of that people in Belgium does not always have much understanding for the invisible pain. We are...
  • I've been playing piano for ten years and recently I've been more and more discouraged by the finger pain (and wrist pain) associated with playing. I've been trying to work on my form, but there's only so much I can do. My biggest issue specifically is that my thumb on my right hand caves in from pressure of pressing down on the keys. Has anybody had this problem, or a similar problem that...
  • anxiousedser

    Pain medication?

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    I'm currently using ibuprofen for my pain, but it hasn't been working very well. Does anyone know any pain medication that's safe for people under 18? Not one that has to be prescribed. One kind of like ibuprofen, where you can buy it from a pharmacy, or Walmart, ect. Sorry if I misspellcsome words or type something twice, my fingers are really sore, so im not going back to fix spelling errors....
  • evm97

    im making my parents fell guilty

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    i dont intend to but when ever i talk bout my suptomes my perents get defnsive like they feel guilty for whats hapaning to me and tell me they cant do anything. of cors im well awear of this and would never expect anything from them. I know im alredy a strain on them, mutch more than any 18 year old should be and compleatly understand why there stresed and upset but i fell need to be abel to talk...
  • dannygrayson18

    Surgery Yesterday

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    Hello everyone! I am Danny. I have been diagnosed with EDS 3... And it is severe. I am beyond flexible. Recently I went to the doctor and he suggested I have a surgery to pull my ankle bones back into place because they were 2 and 1/2 inches apart. I went and had that operation yesterday, and I was informed that both of my ankles are so far shredded (ligaments) that while the surgery would give...
  • Caduceus

    Hip Dislocation Advice

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    Greetings everyone, I am looking for advice of how to minimize dislocations of the hip(T7 if it matters...). I have personally made the chiropractor a mint when I have to visit one at least once a week. It fall out more than that but I often try to tough it out until the inflammation and pain get out of control. Once in a blue moon it spontaneously reduces, but usually I am not so lucky. Any...
  • Orangey123

    Walking barefoot

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    hellowhen I walk barefoot my knees hips and entire low body hurts for a couple days
  • joshseds

    Finding a correlation of EDS and Utah

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    Hello fellow Ehlers-Danlos Syndrome fighters! My name is Josh Stephenson, and I am on a mission to try to find the source/cause of EDS if possible. I currently live in San Tan Valley Az, and am in the process of going to a new physical therapist. Due to my EDS, I have frequent joint subluxations and dislocations, and aquatic physical therapy is a joint friendly way of strengthening my muscles,...
  • Orangey123

    Tennessee doctors

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    any doctors in TNĀ 
  • Orangey123

    Bilateral

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    Does EDS usually effect the body bilaterally?
  • Kon

    Dysphagia issues (difficulty swallowing)

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    I have hypermobility EDS, along with degenerative scoliosis, DDD, Chiari 1 malformation, and too many diagnosis to name. Currently I have been having difficulty with the sensation that my medication is getting "stuck" around my larynx area. I have had episodes (rare) of this in the past, usually if I turn my head mid-swallow or don't remember to drink a bit of water before, during and after...
  • neysabrisson

    Help please? Should I be tested?

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    A question for the community please?I have been extremely hyper mobile my entire life. I describe my childhood as being "spent on crutches". I was and I still am a terrible Clutz! I have issues with repeated sprains of ankles and wrists, diagnosed with degenerative back & neck at 19. IBS at 20. Lots of osteo arthritis. Im 38 now, but about 10 years ago, my pain really increased. I was...
  • jeannietenn

    HELP!! Where do I go?

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    I have had a major health decline in the past 4 years, and I feel so lost. Here are the list of things happening, I know I forgot some stuff.Chronic pain (as with most people who have EDS-HM) in the following: neck, spine, back, shoulders, elbows, wrist, hands, fingers, hips, pelvis, legs, knees, ankles, feet, etc.Subluxation of joints (slipping, almost dislocating, but not completely)Semi-thin...
  • ncjess

    Life with EDS

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    My husband and son have Type 3 so I thought since I am back in college, I will try to bring awareness to this life changing disorder. I am working with a professor for a research paper, and would like to know what life is like living with EDS (whichever type you have)? Has it been difficult getting disability because of the limited awareness of Ehlers-Danlos? My husband and son have given me...