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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  • 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...
  • 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....
  • 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...
  • 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,...
  • 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...
  • 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...
  • Hi there guys i am new to this forum. I have eds (hypermobility type) and tonight i have been getting an odd sensation on my skin on my chest in the area of my left breast. It almost feels like my skin is ripping. I have had this skin tearing sensation before in the past but not for a long time and i have never known what on earth is causing it. Whether it could be my eds or not? It is just...
  • I did not know there was a joint in the ear where the bones were.... I guess it makes sense, bones= joints right/ but my hearing loss is 3/4 quarters due to the joint in my ear being messed up, causing a conduction problem. the other part is nerve damage, from neuro issues. I was just in shock. I have hearing aids which help and I read lips. I am also learning sign language because they said...
  • 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...
  • 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...
  • lwiz

    No one is doing anything

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    I have been really frustrated lately & am just curious if anyone else has been through the same situation or has any sort of advise/tips. I have really been degenerating very rapidly. In my eyes how fast everything is progressing & how quickly I'm growing weak is an extreme. Exactly one year ago I was diving at a highly competitive level and competing to qualify for the 2016 Olympic trials. Now,...
  • deleted_user

    EDS & Numbness

    Has anyone experienced numbness in their arms, hands, legs and or feet due to EDS?
  • 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 was wondering if anyone else with EDS has had immune system problems. I have had really severe sinusitis for almost 2 years and have gotten every respiratory infection in the book this year. I am trying to get in to see an immunologist, but it will take a while before I get an appointment (specialists....you know how it is). Does anybody else get frequent infections? I'm not sure if this is...