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

"Invisible Disability" badge for London transport

  • By ZhooZhoo · New reply 3:12 am
  • Discussion in EDS awareness · 2 replies
  • Hi! As I have HEDS and PoTS, I find it increasingly difficult and painful to stand on hot crowded, moving transport, but because I look normal, I'm too embarrassed to ask another passenger to give up ...

Boost VHC Drink - 530 Calories

  • By Duvie · New reply 12:21 am
  • Journal · 68 replies
  • Thanks to a lovely lady battling ALS, I have found out about this new Boost high- calorie drink to pass on to those struggling to maintain or to gain weight. Check it out online. Take special notice to ...

BLUE feet with Red toes????

  • By joannaemery · New reply 12:19 am
  • Discussion in Newly diagnosed · 7 replies
  • My daughter was newly diagnosed with EDS/lll and POTS. She is 16. We are still figuring things out. For 12 days she a=has had a Post Viral Chronic Fatigue flare-up from Mono 3 years ago. She always gets ...

Easter Sunday-daughter (15) not feeling well

  • By JohnFrancis · New reply yesterday at 11:00 pm
  • Journal · 2 replies
  • It's Easter Sunday- usually a happy day, but my daughter is not feeling well. We had to pass on an invitation to a special dinner a friend was having due to this. Shame-sure wish I could help my 15 year ...

Odd Question

  • By cjnamaste · New reply yesterday at 9:59 pm
  • Discussion in General discussion · 3 replies
  • Happy Easter to those of you who celebrate Christ! I have an odd question that I've been thinking about for some time now. Humor me, if you can. I've always been very sensitive to energy changes, energy ...

Help finding genetic Doctor locally

  • By wally007 · Posted yesterday at 9:47 pm
  • Discussion in Hypermobile EDS (Type III) · 0 replies
  • I am in the Naples Florida area and am currently scheduled at the University of Miami on 4/30/14 for genetic testing. I was diagnosed with HEDS by a rheumatologist in 2011. However, he doesn't know how ...

Looking for a local Dr.

  • By wally007 · Posted yesterday at 9:35 pm
  • Journal · 0 replies
  • I am in need of a local Dr familiar with HEDS. Also a geneticist in the Naples/Ft.Myers area. I am scheduled on 4/30/14 at U of Miami for genetic testing but would prefer to stay local if anyone knows ...


  • By kdg1213 · New reply yesterday at 9:32 pm
  • Journal · 18 replies
  • Today was the firs time I really tested my heart since all these surgeries began, and I feel GREAT! I am so proud or myself ...

Hair Loss

  • By jenbowhay · New reply yesterday at 9:04 pm
  • Discussion in Newly diagnosed · 8 replies
  • Hi Moms- My daughter (on the right) is losing her hair. We have seen a dermatologist and Endocrinologist. We got her hormones and special shampoo. And a DO put her on thyroid, but nothing helps. Her hairline ...

Ehlers-Danlos type 3 and public school

  • By Momofbruce · New reply yesterday at 7:56 pm
  • Discussion in Parents of children with EDS · 54 replies
  • Hi, we have not had a diagnosis yet, but I have no doubt that my 11 year old has EDS. We're fortunate to have good healthcare here (Vermont), but I'm concerned about school. His current school has not ...

Denied for a tattoo?

  • By instrumental12 · New reply yesterday at 6:08 pm
  • Discussion in Classical EDS (Types I and II) · 20 replies
  • So I finally had the nerve to go get my first tattoo, ( just to see if tattoos work for me), yet in explaining my skin condition and the recommendations that people have said on here, they look at me ...

FL Doctor?

  • By SynergySJJ · New reply yesterday at 1:54 pm
  • Discussion in General discussion · 3 replies
  • Hello all. We're new to the Ehlers-Danlos world. I'm looking for a care provider in the Orlando FL area. Any ideas ...

Pain Clinic in Bath, England

  • By JustMe29 · New reply yesterday at 1:50 pm
  • Discussion in Pain management · 6 replies
  • Anyone from the UK? I was listening to the radio show about chronic pain on BBC 5 Live this morning and heard them talking about the pain clinic in Bath. I was just wondering if anyone had been to it ...

Is there a relation between dysautonomia and pseudo-seizures?

  • By dreamn-jane · New reply yesterday at 11:49 am
  • Discussion in Neurologic issues · 87 replies
  • I just experienced a seizure-like experience for the first time ever. For about a minute, I lost all control over my arms, legs, and hands. It was terrifying. I was told by a physician that this was likely ...

keloid scar and itching

  • By butterflygirlbecky · New reply yesterday at 1:40 am
  • Discussion in Dermatology / wound healing · 5 replies
  • I have a large keloid scar on my shoulder from a punch biopsy. It's almost a year old but sometimes it itches so bad. I put lotion on it and it seems to help but does anyone know a more permanent solution ...

heath care won't cover gentic testing at what

  • By jparks87 · New reply April 19, 2014
  • Discussion in Hypermobile EDS (Type III) · 7 replies
  • So i finally have my rhuemtaologist visit and he agreed that i have a lot if not all the symptoms of eds type 3. He reffered me to the genetics clinic at Johns Hopkins with dr. Howard Leavy. I was excited ...

Is anybody else having sensitivity to light & eye pain?

  • By Pavlova · New reply April 19, 2014
  • Discussion in Hypermobile EDS (Type III) · 20 replies
  • Hello, I'm new here. I live in Burlington, ON, not too far from Toronto and was diagnosed with HEDS in 2005. A year ago I started having extreme sensitivity to light. Just one glance out the window to ...

Classic joke

  • By Jmorkan · New reply April 19, 2014
  • Discussion in Humor · 6 replies
  • Why are EDS'ers the mascots for rice-krispies? Because we SNAP, CRACKLE, and POP ...

Back Pain Emergency

  • By Lucy_X_Yyvan · New reply April 19, 2014
  • Journal · 32 replies
  • How do you guys deal with the back pain the comes along with the winter cold? My entire back is inflamed and stiff, and it hurts to move or breathe, really. The pain is becoming unbearable, and I can't ...

Decided to post my entire story (mostly)

  • By kdg1213 · New reply April 19, 2014
  • Journal · 26 replies
  • I am a 23 year old girl who was overweight for most of her life. I lost a bunch of weight in an unhealthy way back in 2009. Then I decided to get healthy. In January of 2011 I started to develop a problem ...

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.