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

Mom is unsympathetic

  • By romeyrider · New reply 12:04 am
  • Discussion in General discussion · 18 replies
  • My mom is very unsympathetic to my condition sometimes. She gets mad at me when my ankle shakes (it randomly shakes for no reason on and off). She thinks it's all in my head. She also is constantly saying ...


  • By esme13 · New reply yesterday at 10:35 pm
  • Discussion in Newly diagnosed · 13 replies
  • Sorry to bother every child had a fall 2 weeks ago was just a little one nothing big but had to have a mir it came back that she had not damaged her ligaments like there had thought but as got ...

Skin removal surgery

  • By Kimmi74370 · New reply yesterday at 10:26 pm
  • Discussion in Hypermobile EDS (Type III) · 3 replies · Photos
  • Has anyone ever had or considered skin removal surgery? If so, what was your results and did insurance cover it. Thanks for any info ...

Orthostatic HYPERtension

  • By ttc4909 · New reply yesterday at 10:10 pm
  • Discussion in Hypermobile EDS (Type III) · 5 replies
  • Does anyone have experience with Orthostatic HYPERtension with POTs in EDS? I have an appt in 2, weeks with a Cardiologist that specialized in dysautonomia, no one so far has had any experience with this ...

Spinal surgery?

  • By LorrieF40 · New reply yesterday at 9:37 pm
  • Discussion in Newly diagnosed · 1 reply
  • Has anyone with EDS, Chiari and Syringomelia had surgery to fix severe kyphosis caused by the EDS? It has been recommended to me by my neurosurgeon that I have the Smith-Robinson technique on my spine ...


  • By Survivor29 · New reply yesterday at 7:27 pm
  • Journal · 96 replies · Photos

I am 26 and have no goals in life

  • By romeyrider · New reply yesterday at 7:12 pm
  • Discussion in General discussion · 11 replies
  • I am 26 years old and live at home with my parents...whom I fear I will live the rest of my life with. I have dreams (in fact I have a tattoo on my wrist of a star to remind me to keep dreaming) but no ...

Doctor's In and Around NYC

  • By Mkiab12345 · New reply yesterday at 5:52 pm
  • Discussion in Family, friends and caregivers · 4 replies
  • Hi every one. I'm newly diagnosed and looking for doctors in New York. I don't live in NYC, but I am close enough to get there within an hour and a half drive. I would like to find doctors that aren't ...

Looking for a doctor/geneticist

  • By Jchammonds · New reply yesterday at 5:39 pm
  • Discussion in General discussion · 3 replies
  • My 21 year old brother, Ethan, recently experienced a spontaneous rupture of the sigmoid colon. During the surgery for that, doctors noticed a splenic artery aneurysm. The colon could not be sutured because ...

What are the neurological symptoms of EDS?

  • By Liz90 · New reply yesterday at 3:30 pm
  • Discussion in Neurologic issues · 11 replies
  • Hi all. I've been diagnosed EDS (Hypermobility) for a while now but am really struggling to find a doctor who can engage with the neurological symptoms I have been experiencing over the last few years ...

anyone else sublux more with age

  • By stephijay · New reply yesterday at 12:41 pm
  • Discussion in Hypermobile EDS (Type III) · 86 replies
  • I wonder if anyone else has noticed they sublux more with age? I am just shy of 40 and hadnt had a chronic problem w subluxing since i was a teen. now my shoulder and hip do on a daily basis. is this ...

Long Island EDS Meeting in Huntington Station Sunday, May 31st!

  • By insearchofcom4t · Posted yesterday at 12:23 pm
  • Discussion in Local support groups · 0 replies
  • For the first time, we'll be having our LI EDS meeting in Huntington Station which is more centrally located. We hope that many more will be able to attend! Join us Sunday, May 31 from 12:30-2:30. RSVP ...

Treatment for SI joint pain?

  • By MarieAB · New reply yesterday at 10:06 am
  • Discussion in Hypermobile EDS (Type III) · 17 replies · Photos
  • Anyone with experience or advice for pain in their sacroiliac joint? For a couple of years I've had increasing pain when sitting. Initially it was just when I sat on hard seats (bleachers, picnic benches ...

To brace, or not to brace?

  • By tigerbomb · New reply yesterday at 8:10 am
  • Discussion in Bones, joints and muscles · 13 replies
  • Earlier this week, I met with a well-respected physiatrist who specializes in spinal rehabilitation. For the most part, I was happy with my visit. He sent me back to physical therapy (I stopped going ...

Anyone know of a hand specialist in L.A. who knows about Silver Ring Splint

  • By Emilyjm · New reply yesterday at 7:59 am
  • Discussion in Newly diagnosed · 4 replies
  • Need Help.. I can't do a lot of basic typing, holding a glass, pen, or change a diaper..feed my daughter..brush my hair just to name a few. My Doctor is willing to write a perscrition once ...

Ankylosing Spondylitis & EDS Type 3 Diagnosis

  • By Kim113 · New reply May 22, 2015
  • Discussion in Newly diagnosed · 4 replies
  • I have newly been diagnosed with Ankylosing Spondylitis (in addition to EDS Type 3)... and I am on a TON of medications... I was wondering if anyone else out there has this same diagnosis? I am on a Butrans ...

Where can I find a private lab that will test for EDS in San Francisco, CA

  • By ivorycurls · Posted May 22, 2015
  • Discussion in Other types of EDS · 0 replies
  • Hello EDS People: Does anyone know of a private lab that will test for EDS Genetic typing? I live in the San Francisco, CA area ...

Help with finding a genetic doctor

  • By ChiChiLynn · New reply May 22, 2015
  • Discussion in General discussion · 4 replies
  • I recently had an appointment at UCSF in San Francisco with a cardiologists. They gave me this appointment before they would order the genetic testing to find out if it appeared to be vascular. He said ...

Hi and need help finding ding Dr's in Texas

  • By Melmama7 · New reply May 22, 2015
  • Discussion in General discussion · 10 replies
  • Hi my name is Melanie Williams and I am looking for a Dr. familiar with EDS in the Midland/Odessa/Lubbock Texas area. I'm new to this and need some answers ...

May activities for many EDS Support Groups

  • By EDS-CincyDAD · Posted May 22, 2015
  • Discussion in EDS awareness · 0 replies
  • Join other EDSers participating in May EDS Awareness activities: wareness-month-activities-may-year-long ...

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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.