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

Rheumatologist in Bay Area

  • By bitu · New reply 7:35 pm
  • Discussion in Hypermobile EDS (Type III) · 2 replies
  • Does anyone have a recommendation for a rheumatologist around bay area that deals with and understands EDS type III. The genetecist recommends to have a good rheumatologist to help with pain control and ...

2-week intensive program at Cincinnati Children's?

  • By TiredMum · Posted 7:10 pm
  • Discussion in Hypermobile EDS (Type III) · 0 replies
  • Hi all, I met Dr. Neilson from Cincinnati Children's Hospital at the national conference and mentioned to him that there should be an EDS camp-like program for kids and he responded that there is a 2-week ...

A little more hump day humor

  • By CentaurInaChinashop · Posted 7:04 pm
  • Discussion in Humor · 0 replies
  • I had included a link to one of these videos last week, so here are all 8 of the 8 videos in 8 days by Weird Al Yankovic. TACKY (Parody of Pharrell's "Happy") ...

If you knew then what you know now, what would you do different?

  • By Nancy33 · New reply 6:17 pm
  • Discussion in Hypermobile EDS (Type III) · 22 replies
  • Recently, my daughter age 10, dislocated her knee. The orthopedic stated she had EDS Hypermobility. We will see the genetics doctor in Oct. The ortho did do the a hypromobility test. After reading about ...

In need of brief genetic lesson

  • By EllenW · New reply 6:15 pm
  • Discussion in General discussion · 2 replies
  • Hi everyone, I was wondering if someone can explain if having a positive Col III A 1 variant would lead to a vascular dx or is it possible to have that variant and be in the hypermobile category? My two ...

Paralympic rules

  • By Sarahdylan · New reply 6:06 pm
  • Discussion in Hypermobile EDS (Type III) · 12 replies
  • Hi all my name is Sandra mc carthy I have a son who is 13 years old and has e d s type 3 . We live in Ireland and as we are a smaller country there is very little information here. My son loves sport ...

Finger pain relief?

  • By cendawan · New reply 5:41 pm
  • Discussion in Hypermobile EDS (Type III) · 13 replies
  • Hi, I am new here and was wondering if anyone had any ideas for finger pain relief. I have EDS type III and all of my finger joints are very hypermobile. I know fingers seem like pretty minor body parts ...

Kyphosis in a child

  • By EileenElise · New reply 5:23 pm
  • Discussion in Hypermobile EDS (Type III) · 4 replies
  • Help, please. My 11 year old daughter has EDS type 3. She has a 63 degree kyphosis in her upper back, which is abnormal. The orthopedist said maybe she could be braced with a Thoracic Hyperextension Brace ...

ehlers danlos

  • By mookie123 · New reply 3:32 pm
  • Discussion in Pain management · 2 replies
  • hi my mum has ed and i would like to ask this whole community for their advice on treatment diet an pain manegment please ... hope... thinking of moving to UK

  • By failbetter · New reply 2:08 pm
  • Discussion in Hypermobile EDS (Type III) · 3 replies
  • It's been just under a year since I was officially diagnosed with HEDS. In this past years nothing has been done by any of my numerous doctors to better my life. I've seen new doctors who basically all ...

What happens next?

  • By KailyBall · New reply 2:07 pm
  • Discussion in Vascular EDS (Type IV) · 3 replies
  • I'll start by introducing myself since this is my first post. My name is Kaily Ball, from Oklahoma and just recent received genetic confirmation of vEDS. My geneticist and POTS specialist (the specialist ...

7 Findings From Leapfrog's New Hospital Safety Report

  • By Cotntail · New reply 11:37 am
  • Discussion in General discussion · 2 replies
  • The Leapfrog Group is a voluntary program aimed at mobilizing employer purchasing power to alert America’s health industry that big leaps in health care safety, quality and customer value will be recognized ...


  • By Spalmer7133 · New reply 11:29 am
  • Journal · 2 replies
  • I've been told that I've got Chiari malformation type 1 and also EDS. This road that I'm on is a scary road. My family tries to help support me and understand me but it's not much help. I would love to ...


  • By Spalmer7133 · New reply 10:51 am
  • Discussion in Newly diagnosed · 2 replies
  • Hello, I'm Samantha. I've just found out about 4 months ago that I've got Chiari Malformation type 1 and EDS. I never thought my life was going to go down this road. My whole life my health has been bad ...

Off-Label Medication

  • By DeeDee58 · New reply 10:44 am
  • Discussion in Pain management · 8 replies
  • I am 56 and finally got diagnosed with EDS-HM about 5 years ago although the first time I visited a doctor for symptoms I was just 10. I have a set of doctors here in North County San Diego that, while ...

Live life strong

  • By cissyb82 · New reply 9:07 am
  • Journal · 1 reply
  • So I am no longer going to physical therapy. I've hit a plateau where my knee cannot handle any more without a guaranteed subluxation every exercise or stretch. I have now been referred to a wonderful ...

Diagnosis at 52

  • By Kuhlgamma · New reply 4:26 am
  • Discussion in Hypermobile EDS (Type III) · 14 replies
  • I have just been diagnosed with this last week. I fiind it strange to be given this diagnosis at my age. Would have thought this would have been caught earlier. I have severe back problems, many back ...

my brain

  • By margann222 · New reply 3:27 am
  • Discussion in Hypermobile EDS (Type III) · 39 replies
  • Hi iam having a lot of brain function problems , I write words around the wrong way, have tmes cannot spell, cannot , work out things in general, headaches, seem to cry easily , fatique depression, ijust ...

Feeling overwhelmed

  • By CindySylvia · New reply 1:07 am
  • Discussion in Pain management · 18 replies
  • So I had posted earlier if anyone knew a Doctor/ Rheumatologist that specializes in EDS on the Oklahoma City area, with no response. I do need to go to someone but don't know where to start. I really ...

what do you do for the arthritis?

  • By cmtandeds · New reply yesterday at 11:38 pm
  • Discussion in Hypermobile EDS (Type III) · 8 replies
  • I am 36 and have osteoarthritis basically everywhere. The worst pain is hands, shoulder, knees, back and just recently my ankle. I take nsaid when it gets awful, but it doesn't take enough of the pain ...

Log in to see more

Don't have an Inspire account? Sign up now!

Forgot password?

Things you can do

Support EDNF

Help the Ehlers-Danlos National Foundation reach its goals and support people like yourself by making a donation today.

Donate to the Ehlers-Danlos National Foundation

Discussion topics

Community leaders

Inspire others

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.