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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  • supportmydaughter

    Depression

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    Hi I'm new to this group.  So forgive the long text.  My daughter is 19 and was diagnosed with EDS type 3 a few years ago.  She has already had tibial and petella realignment surgery and needs the other knee done.  We have delt with bowl issues and anxiety attachs as well as cronic depression.  I am wondering if anyone has found anything to help with the depression?  She has started taking...
  • jverga

    Finger pain while playing piano - solutions?

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    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...
  • OliviaEDS

    Questions about EDS

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    Hey everyone! :-)My name is Olivia and I'm new here. First of all please excuse my English, I come from Germany and don't speak English very often. I'm fifteen years old and got diagnosed with EDS Type 3 in December 2016. I have chronical pain, especially in my back since I was thirteen. My mum has EDS too and we both have got the same problem : the doctors in Germany. Many doctors and Physical...
  • Kayla_Drake

    Being 15 with EDS

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    I'm actually pretty happy that its been about a year since I've been to the hospital for stitches. I'm always getting made fun of for my stretchy skin or my scars but it'd not easy living with EDS. I'm a fighter and I try to not let others bring me down because I'm different and if you have EDS too don't let people bring out down. Just rise to the top and make the best out of life.
  • AlissaP

    How Can Family Help?

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    Hi everyone, I am looking for ways to help a loved one with EDS. I know she is in a lot of pain, but whenever I ask what I can do to help she says she is all set. Is there anything your family/ friends have done or you wish they would do? From my research I know that EDS affects each person differently, so there wont be a "one size fits all" answer, but any suggestions you have would be greatly...
  • spbarlow

    Daughter just diagnosed, want to help her.

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    My daughter, age 6, was just diagnosed with the hypermobility type of EDS. I was wondering if anyone here has a child with this or was diagnosed as a child and can share their experience. The indications leading to her diagnosis were her weight being disproportionate to her height (she is only 36 pounds but is almost 4 ft tall), easy bruising, multiple falls resulting in pain indicative of an...
  • bulldog

    Kidney Stones and EDS

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    My daughter has EDS. She also has chronic kidney stones and passes about one every 6 weeks. She has low citrate in her urine which has taken 17 years to find this out ughhhh. She is on a supplement which is helping and drinks lots of lemon aide. Has anyone out there with EDS experienced the same problems. 
  • Sissy678

    how do you cope?

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    im 20 years old and was just recently diagnosed with eds hypermobility. my pain intensifies every day. how does everyone cope with the pain, depression, and fatigue?
  • 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...
  • n65L4tB

    frustration with poor medical treatment

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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...
  • 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