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


  • By kristenk198226 · New reply yesterday at 11:36 pm
  • Journal · 4 replies
  • I'm glad I finally have a place to vent my frustrations with it all. I have this diagnosis and my son does to and if I can't get proper management of it, then how am I suppose to help him. I want to know ...

DC Metro Support Group Meeting - 12/14/14

  • By ThisIsTotallyMyName · Posted yesterday at 10:50 pm
  • Discussion in Local support groups · 0 replies
  • Hi Everyone! I am absolutely thrilled to announce the details of our next meeting: Speaker: Dr. David S. Goldstein, M.D., Ph.D. Title: "Autonomic Function in EDS" Sunday, December 14, 2014 Tenley-Friendship ...

knee problem-patellarfemoral pain

  • By dee123u · New reply yesterday at 10:41 pm
  • Discussion in Hypermobile EDS (Type III) · 10 replies
  • has anybody been diagnosed with patellar femoral syndrome of the knee the doctor gave me a brace for now and have to do therapy if it gets worse he said there is a surgery for it ...

Welcome to New members

  • By Duvie · New reply yesterday at 9:44 pm
  • Journal · 28 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 ...

arachnoid cyst

  • By Maddie28 · New reply yesterday at 9:10 pm
  • Discussion in Newly diagnosed · 6 replies
  • Hello everyone, im new to this site. Searching for answers, just diagnosed with an Arachnoid cyst on the left posterior fossa of my brain. I have an appointment with neurologist today. Are there any specific ...

Jaw Sublaxations

  • By EDS_Girl · New reply yesterday at 9:04 pm
  • Discussion in Hypermobile EDS (Type III) · 6 replies
  • Anyone else's jaw sometimes feel like it's out of place and/or constantly pop? Most morning when I wake up, I can't open my mouth all the way. But throughout the day my jaw usually pops or just works ...

Long Island EDS support Group - speaker

  • By veryvjb · Posted yesterday at 8:36 pm
  • Discussion in Local support groups · 0 replies
  • Long Island Ehlers-Danlos Syndrome Support Group Join us Sunday, November 16th @ 12:30 Guest Speaker: David Tegay, D.O., F.A.C.M.G Dr. Tegay has expertise in clinical genetics and experience with patients ...

Disability evaluation warning

  • By Zyp · New reply yesterday at 8:04 pm
  • Journal · 6 replies
  • I saw an article on "Independent Medical Examiners: facts and fallacies" that reminded me of my own disastrous encounter with one of these doctors, who are selected by your disability insurance company ...

Prolotheraphy Treatments.......My Doctor is recommending I try them...

  • By GraceAndStrength · New reply yesterday at 6:44 pm
  • Discussion in Hypermobile EDS (Type III) · 14 replies
  • I have a new pain management doctor who has recommended that I try prolotheraphy, he would do the procedures, first in my hips, which sublex (occasionally dislocate) the most (often several times a week ...

Antibiotics and Sublaxations

  • By susannahmp · New reply yesterday at 5:27 pm
  • Discussion in General discussion · 6 replies
  • Please forgive me if my terminology is incorrect as this I new for us. Has anyone ever seen a correlation between taking antibiotics and subluxations? I am not sure if it is causative or coincidence in ...

14yr old daughter

  • By ljslight · New reply yesterday at 4:59 pm
  • Discussion in Parents of children with EDS · 9 replies
  • I was given the news that my daughter may have Ehlers-Danlos. I have to wait to see the doctor in Iowa City, Iowa for up to 8 months. I am confused what this means for her. She is adopted and I have no ...

Why me?

  • By Zyp · New reply yesterday at 4:53 pm
  • Journal · 3 replies
  • Why People sometimes ask: Do I ever wonder why? When I still felt invincible, my shining star still on the rise, my future still unscathed and bright, anything seemed possible. Anything but this. A cosmic ...

Study suggests PPI use linked to hypomagnesemia

  • By ZipperedZebra · New reply yesterday at 4:51 pm
  • Discussion in General discussion · 2 replies
  • Here's a link to a study showing a connection between the use of proton pump inhibitors and hypomagnesemia. Since magnesium is required for well over 300 processes in the human body, and since even a ...

Seattle area specialists?

  • By hrsilverman · New reply yesterday at 11:46 am
  • Discussion in Hypermobile EDS (Type III) · 2 replies
  • I have had hypermobility and pain problems since childhood. I have been given several diagnoses and seen rheumatologists and recently my mother was diagnosed with EDS out on the east coast. The more I ...

2 hospital admission this month !

  • By moroe78 · New reply yesterday at 11:25 am
  • Discussion in General discussion · 3 replies
  • Hello just got home from my second admission thus month.Looking for anyone who may have same issues,slowly I feel I am slipping away.I have ischaemic colitis and ishemic areas now worsening in my brain ...

Reading about others & a 'hopeful dx'

  • By Roach08 · New reply yesterday at 3:18 am
  • Discussion in Classical EDS (Types I and II) · 19 replies
  • This may just be me, but I have a feeling it is not... when I joined this group not long ago, I was reading mainly about those with a dx of EDS & many with POTS/dysautonomia, like myself. It was very ...

anyone have eds and another genetic connective tissue disorder?

  • By archiepoo · New reply yesterday at 2:53 am
  • Discussion in General discussion · 21 replies
  • Hi everyone i have veds -my children have assorted eds symptoms but all son is now being tested for marfans syndrome .we also have another completely unrelated genetic condition so my question ...

EDS Philly Fall Meeting! (Saturday, November 8)

  • By tigerbomb · New reply October 29, 2014
  • Discussion in Local support groups · 9 replies
  • The Ehlers-Danlos Support Group of Greater Philadelphia cordially invites you to our fall meeting! We welcome people with diagnosed or suspected EDS, their families, and their friends. TIME: Saturday ...

EDS and Neurology

  • By Viciousbanana · New reply October 29, 2014
  • Discussion in Neurologic issues · 10 replies
  • Hi everyone. I have my first neurological consult tomorrow. I haven't yet been diagnosed with EDS, but suspect type III with vascular crossover. I have POTS too. What would be some good questions to ask ...

Collapse - has this happened to you?

  • By Jenny1993 · New reply October 29, 2014
  • Discussion in Hypermobile EDS (Type III) · 15 replies
  • Good morning. Hope everyone feels their best today. So I've had a couple of episodes when my legs basically become like rubber and I feel unable to control them. It begins with the general feeling of ...

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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.