The Ehlers-Danlos National Foundation Support Community connects patients, families, friends and caregivers for knowledge, support and inspiration... More about this group

suggestions welcomed

  • By mommybird · New reply 10:05 am
  • Discussion in General discussion · 12 replies
  • I am needing to know if anyone has every used a chiropractor for pain relief. I am thinking hard on taking my daughter Emily to see one. She was diagnosed in January with joint hypermobility syndrome ...

Horribly, severely, denied pain relief and treatment

  • By Bellabee57 · Posted 10:02 am
  • Discussion in Pain management · 0 replies
  • Went to pcp last year with severe, 10, pain from pelvic floor dysfunction, had bouts before that always resolved. When pain was lingering, sent to pt, made worse, dismissed by pcp even after partner came ...


  • By worriermom · Posted 9:49 am
  • Discussion in Parents of children with EDS · 0 replies
  • We have 2 girls with EDS3 and our youngest has only been dislocating in the past 8 months or so. She is dislocating her jaw, and shoulders very often, sometimes as often as daily the knee and hand less ...

Hi, I am Meridith

  • By Living4mymoment · New reply 9:15 am
  • Discussion in General discussion · 3 replies
  • Hi, I am Meridith. I am 15 and I have EDS. I figured out about a year ago. What I thought was normal for everyone turns out is not. Then my joints started piping out of place. and i found it hard to keep ...

Rosacea and EDS

  • By MightyMarse · New reply 7:01 am
  • Discussion in Hypermobile EDS (Type III) · 63 replies
  • Hi! Just wondering if Rosacea is associated with EDS? My brother and I both have Rosacea. I was officially diagnosed in January with EDS, by a Medical Geneticist from Penn. My brother has yet to be diagnosed ...


  • By M5646 · New reply 2:00 am
  • Discussion in General discussion · 24 replies
  • Last Saturday, after I vacuumed, took a shower then had a nap, I woke up having chest pains so bad I thought I would barf, that include my arms and sometimes my throat or part of it. ER said heart EKG ...

Scared Young Adult with EDS

  • By elane14 · New reply 12:25 am
  • Discussion in Newly diagnosed · 12 replies
  • Hi friends! I was diagnosed with EDS by a rheumatologist and my physical therapist about a year ago, after going through about three years of PT and various doctors suggesting everything from fibromyalgia ...

Syracuse Area EDSers: Meeting of CNY EDSers

  • By EllyMae · New reply yesterday at 10:28 pm
  • Discussion in Local support groups · 3 replies
  • We'll be meeting next Saturday, Sept. 27, at the Manlius Library. We'll watch Dr. Richard Barnum's presentation on psychiatric misdiagnoses in EDS and discuss. Hope to see you there ...

Official Diagnosis Yes/No?

  • By Caris20 · New reply yesterday at 9:44 pm
  • Discussion in Parents of children with EDS · 2 replies
  • Hello Everyone, I'm very new to EDS. My daughter (16) right shoulder starting dislocating and after sitting down with an orthopedic surgeon we realized not only her right shoulder but her left, knees ...

Intestinal Failure/TPN Dependence

  • By curly63 · New reply yesterday at 8:20 pm
  • Discussion in Gastrointestinal issues · 8 replies · Photos
  • Looking to connect with people dealing with EDS who also have intestinal failure NOT due to gastroparesis. My 22 year old daughter's GI tract doesn't tolerate any form of nutrition and she still has diarrhea ...

Northern Kentucky PT

  • By ukwildcat · New reply yesterday at 4:16 pm
  • Discussion in Hypermobile EDS (Type III) · 1 reply
  • I live in Northern Kentucky and went to Opal Riddle for PT. I love Opal but hated that I was always having to ask someone to drive me to physical therapy. I have grandparents that need a caregiver a lot ...

Welcome to New members

  • By Duvie · New reply yesterday at 2:09 pm
  • Journal · 23 replies
  • I love Inspire's network of support groups and their amazing members. Many patients may have multiple medical issues, so it's great that Inspire offers 219 groups to choose from. I enjoy attempting to ...


  • By Praisekat · New reply yesterday at 12:45 pm
  • Discussion in Dermatology / wound healing · 16 replies · Photos
  • Just wondering...Does anyone else have ACROGERIA? I was diagnosed with EDS, vascular type, at age 36...that would be 17 years ago. I have always had "strange" looking skin, blotchy, veins at the surface ...

Encouraging Words of Wisdom & Faith

  • By Sunshine__07 · Posted yesterday at 12:42 pm
  • Journal · 0 replies · Photos
  • These are just a few words that really get me through the tough times. They have strengthened me on my most painful days and I thought I'd share; I pray they are a a blessing ...

reds day

  • By mommybird · Posted yesterday at 12:15 pm
  • Journal · 0 replies
  • Well today I thought was going to be a good day. But once again things don't turn out the way we want them. Mommy and red yesterday started to clean the room. She never mentioned she was in pain the whole ...

Ear dysfunction

  • By Kuhlgamma · New reply yesterday at 10:20 am
  • Discussion in Hypermobile EDS (Type III) · 16 replies
  • Just wondering if anyone else experiences this strange symptom. When I run or jump I gat pain in my ear, which becomes so intense I cannot continie. I also get like a vibration or pounding- like the bones ...

Weakness of hip and knees, trouble with walking

  • By karinabutterfly · New reply yesterday at 7:09 am
  • Discussion in Hypermobile EDS (Type III) · 16 replies
  • Hey there, I am pretty desperate and wanted to ask you if someone here has the same problems. So I was diagnosed with EDS Type III by Prof. Henderson a couple of month ago. My problems started with multiple ...

EDS Support Group in NYC, Tuesday September 30th

  • By michaelb1986 · New reply yesterday at 4:39 am
  • Discussion in Local support groups · 1 reply · Photos
  • Hi everyone! I am honored to announce that I will be leading New York City's Ehlers-Danlos Support Group on September 30. If you have or know anyone with EDS in the NYC area, and are looking for a place ...

Knee Surgery....Again....

  • By OneTiredDog · New reply yesterday at 3:29 am
  • Discussion in Hypermobile EDS (Type III) · 11 replies
  • So, I'm having knee surgery again--surgery number 5. Another meniscus tear and possibly a chunk out of the articulate cartilage on my femur requiring an OATS procedure. My knees are in so much friggin ...

Writing utensils

  • By yourfine · New reply yesterday at 2:23 am
  • Discussion in Newly diagnosed · 20 replies
  • Please help. My 8 yr old is having pain writing in school in wrist and fingers. There are so many products out there such as pencil grips. Can anyone recommend products and brands that work with hypermobilty ...

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About this community

The Ehlers-Danlos National Foundation Support Community connects patients, families, friends and caregivers for knowledge, support and inspiration. This community is sponsored by the Ehlers-Danlos National Foundation, an Inspire trusted partner.