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

INSIDEOUT GUTS

M5646
  • By M5646 · New reply 2:42 pm
  • Discussion in Gastrointestinal issues · 6 replies
  • I have been scoped both ends so many times and nothing is found aside from being red. Symptoms: *eat a bite no matter how small or large or what it is, or take a drink no matter how small or gulping it ...

Social Security Disability, SSI & Child's SSI Book by lawyer w/ eds- advice

butterfly822
  • By butterfly822 · New reply 2:28 pm
  • Discussion in General discussion · 48 replies
  • Hi, everyone! I have HEDS and told possibly vascular EDS. I'm also a lawyer who primarily practices SSD, SSI and Child's SSI. I am on a sabbatical right now while I heal broken bones from an accident ...

Smoking and EDS/ POTS/ Dysautonomia

Jhubbard3
  • By Jhubbard3 · New reply 2:06 pm
  • Discussion in Newly diagnosed · 3 replies
  • Hi, i was just wondering, are there any smokers on here? (Marijuana or cigarettes, I am both). Let me start from the sort of beginning. I moved 4mo ago from Arkansas to Oregon. It's Monday and this past ...

Menopause

Loosy
  • By Loosy · New reply 1:21 pm
  • Discussion in Hypermobile EDS (Type III) · 9 replies
  • Has anyone made it thru menopause yet? I'm looking for information how the changing hormones can affect collagen ...

Rib Graft

Emmasmommom
  • By Emmasmommom · Posted 1:11 pm
  • Discussion in General discussion · 0 replies
  • After cranio-cervicial fusion using a rib graft, has anyone had the rib graft "slip out of place"? If so, what course of action was taken ...

C1/C2 instability diagnosis

Toraline
  • By Toraline · New reply 12:13 pm
  • Discussion in Bones, joints and muscles · 50 replies
  • Hi, I'm just wondering if anyone knows what the proper diagnostic test is for a C1/C2 instability. Is it always an MRI or are there other tests? I had an upright MRI, but the results said no signs of ...

Kentucky and in Pain

Skyward
  • By Skyward · New reply 11:30 am
  • Discussion in Newly diagnosed · 1 reply
  • Hi I am new here and was just diagnosed TODAY. I live in Kentucky and had been treated for Years with Tramadol ( I can not take NSAID's due to GI issues like bleeds) for joint pain (subluxations, etc ...

Perforated colon

DebbyV
  • By DebbyV · New reply 11:28 am
  • Discussion in Hypermobile EDS (Type III) · 4 replies
  • 12 days ago my 22 year old daughter was rushed to emergency surgery because there was free air in her abdominal cavity. Surgeon found that there was a perforation in the lining of her ascending colon ...

ARTICLE:Genomic Analyses of Patients With Unexplained Early-Onset Scoliosis

Cotntail
  • By Cotntail · Posted 10:45 am
  • Discussion in General discussion · 0 replies
  • This study might not only be of interest to individuals who have scoliosis but also as a general encouragement to the rest of us. These researchers were thinking outside the box and went the extra mile ...

DR SAYS I'M TOO OLD FOR EDS TESTING ??

M5646
  • By M5646 · New reply 10:14 am
  • Discussion in General discussion · 41 replies · Photos
  • I HAD A DAUGHTER THAT HAD EDS III. SHE DIED FROM SUICIDE FROM EVERYTHING THAT WAS GOING ON. GINNER WAS 25. YEARS LATER I'M AT PT FOR MY ACHILLES WHICH HAS BECOME STIFF. THE LADY TOOK ALL MY HISTORY, WOW ...

Bunionectomy helpful?

janegood4all
  • By janegood4all · New reply 10:06 am
  • Discussion in Hypermobile EDS (Type III) · 10 replies
  • I am scheduled to have a bunionectomy in a few week. Has anybody had a positive expetience after a bunionectomy? I saw a long string recently about the down sides of foot surgery for hypermobile types ...

New Florida Support Group

Keakitty
  • By Keakitty · New reply 8:56 am
  • Discussion in Local support groups · 31 replies · Photos
  • I have formed a new Florida EDS group on Facebook. We plan to organize local meet-ups that take place in different locations throughout Florida to allow those who can't travel long distance a better chance ...

Breast implants surgery and eds

Shakiracarolan
  • By Shakiracarolan · New reply 8:05 am
  • Discussion in Dermatology / wound healing · 17 replies
  • Hi everyone! I'm interested to know if any one has had breast implants and if they have had any issues. I have wanted them for a while but thought I'd do a lot of research first. I have EDS 3, I have ...

15 and dealing with JRA HEDS and POTS... Help?

Nina_Storm
  • By Nina_Storm · New reply yesterday at 11:18 pm
  • Journal · 6 replies
  • So Last December I was diagnosed with JRA and the swelling in my body got so bad I gained about ten pounds. During Christmas I could barely walk or sit down. I even had to change the way I did things ...

EDS and the autism spectrum

xrRainbow
  • By xrRainbow · New reply yesterday at 9:53 pm
  • Discussion in General discussion · 21 replies
  • I'm beginning to realize that what I've been thinking since I was about 18 might be true. I do have some mild signs of autism. And I'm more ready to accept that. I'm not very comfortable socially, and ...

EDS Article About How The Body With EDS Does It's Thing.

amyhosp
  • By amyhosp · New reply yesterday at 8:33 pm
  • Discussion in General discussion · 3 replies
  • I have posted on my blog an interesting article about how EDS works, or rather makes things not work in the body. http://genesthatdontfit.blogspot.com/201 4/08/eds-article-about-how-body-with-eds .html ...

Baton Rouge, LA names needed of professionals

Nancy33
  • By Nancy33 · New reply yesterday at 7:18 pm
  • Discussion in Newly diagnosed · 4 replies
  • My daughter was newly diagnosed with EDS by an orthopedic this summer. We will see Dr. Superneaux on Oct. 1st. Currently, we have been lucky with a podiatrist and orthopedic working with us. Still if ...

Nail Fold Hemorrages?

mugwagirl
  • By mugwagirl · New reply yesterday at 6:58 pm
  • Discussion in Dermatology / wound healing · 1 reply
  • I am yet to be diagnosed, but had a high enough score on the Beighton scale for my rheumy to think it might be possible that my hyper-mobility, might be EDS Type 3. Along with my other symptoms (previously ...

Salida, Colorado support group?

may05
  • By may05 · Posted yesterday at 4:22 pm
  • Discussion in Local support groups · 0 replies
  • Just posting my thought of starting a support group in Salida Colorado to see if anyone is interested. Please send me a message if you are interested ...

Embarrassing problems continued. . .

HeidiHope
  • By HeidiHope · New reply yesterday at 3:39 pm
  • Discussion in Gastrointestinal issues · 12 replies
  • I apologize if this has been covered already, but I really need some advice/insight. it is extremely embarrassing, but I ended up in the ER again this weekend, for the third time this year, for issues ...

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.