Ehlers-Danlos National Foundation Support Community

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

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So here goes nothing

By CAcatlady · New reply 11:17 pm
Journal · 1 reply
I just joined the group last week, after being diagnosed in March with hypermobility. I'm not exactly sure what I'm looking for by participating, other than some validation. My sister and her oldest daughter ...

We need your stories!!! FDA workshop May 30th!

By Smilemommy · New reply 10:01 pm
Discussion in EDS awareness · 12 replies
We need your story! Please support us as we go in front of the FDA to make our personal statements on May 30th. Several of us will be making public statements to the FDA, putting a human face on the Chronic ...

Support group in Philadelphia, PA area

By michellej · New reply 9:40 pm
Discussion in Local support groups · 17 replies
Anyone know of, or interested in helping to set up, a support group in the Philly area? I saw the NJ support group, but Northern NJ is a bit of a hike and was hoping to stay closer to home ...

Thank You for the discussions! (altered, replies accepted)

By OldTexan · New reply 9:07 pm
Journal · 65 replies
When I first arrived last year I was amazed to find such an honest and open place where we could discuss ANY problem that concerned us, and to me that was a departure from what I had seen on other discussion ...

Difficulty walking and standing

By Rookie12345 · New reply 6:57 pm
Discussion in Hypermobile EDS (Type III) · 6 replies
Hi, I have hypermobility syndrome and over the past 2 years I have had increasing difficulty walking and now even standing. I do not have pain but I can't seem to stabilize my pelvis/spine so I hyperextend ...

Support Group for Florida

By Christina14567 · New reply 11:02 am
Discussion in General discussion · 7 replies
Hi all! So I'm thinking it's time to take this into my own hands. You know what they say; if you want it down right, you have to do it yourself. Well I'd like to start a Florida Chapter Support Group ...

Help finding good shoes!

By ChildOfJobsGod · New reply 10:40 am
Discussion in Bones, joints and muscles · 28 replies
I am on the verge of buying a cane, I limp so bad, but Mom mentioned that a good pair of shoes might help my hips more. I hate shoe shopping and went to 6 different places looking for something. Any ideas ...

Specialists names

By murd55 · New reply 9:59 am
Discussion in EDS awareness · 1 reply
Hey guys, I haven't posted here for a while. I was wondering if I could get a list of EDS specialists names and contact info. I live in Canada in a small town and my geneticist doesn't even have any information ...

At least I know...

By CAcatlady · New reply 12:30 am
Discussion in Newly diagnosed · 4 replies
After years of wondering why I kept spraining feet and ankles and knees and wrists and everything else, now I know. My sister was diagnosed several years ago with type 3 and POTS, and her oldest has type ...

parent of an adult child with EDS

By lwyour · New reply yesterday at 9:30 pm
Discussion in Parents of children with EDS · 19 replies
Hi all, I am the parent of a 20 year old with a new EDS diagnosis. Even though my baby is an adult I find I am stillgoing with her from doctor to doctor to offer support, remember the questions we meant ...

Official EDS Diagnoses?

By brandydeshea · New reply yesterday at 8:26 pm
Discussion in General discussion · 10 replies
I have been told by some EDS'ers that in order to have your diagnosis of EDS taken seriously you must be diagnosed by a geneticist? What are your experiences? I was diagnosed by a Rheumatologist after ...

2012 Convention

By girlinchair · New reply yesterday at 5:18 pm
Discussion in EDS awareness · 7 replies
I was just wondering who is in charge of working on the summer of 2012 convention? I have sent alerts out to 2 of my daughter's docs in hopes they will attend. One is a mast cell doc which seems to be ...

PT Today May 15, 2012.. there's hope!

By jess188 · Posted yesterday at 3:18 pm
Journal · 0 replies
A Good Day at PT yea! It started a little rough last week after PT as my left side that in 4 yrs never went out, did... so what had happened was that I developed a ton of trigger points in the left side ...

Ehlers Danlos and Tattoos

By JAY_ARE_TEE · New reply yesterday at 3:15 pm
Discussion in Classical EDS (Types I and II) · 10 replies
Hello everyone my name is Jacob I have Classical EDS, Very soft skin that comes along with easy cuts and bruising. I was wondering if i could get a Tattoo, would my skin be cut by the needle ...

Unbearable Abdominal Pain

By Pollyanne · New reply yesterday at 12:00 pm
Discussion in Newly diagnosed · 13 replies
Hello everyone! I have a 'new' symptom since about a year ago when I became pregnant. I developed such severe abdominal pain that I am no longer able to work, walk normally, clean my house properly...I ...

Hypermobility diagnosis

By Mich333 · New reply yesterday at 10:54 am
Discussion in Hypermobile EDS (Type III) · 3 replies
My 18 year old son has POTS since he turned 13. He was diagnosed with ehlers hypermobility around 15 years old mostly do to his intense, chronic pain. We are also checking into Lymes ( for the 4th time ...

Fatigue

By newcode · New reply yesterday at 9:49 am
Discussion in General discussion · 1 reply
Need information about fatigue, type of meds, vitamins etc., Thanks ...

pulled out of school

By Kaytigirl · New reply yesterday at 9:43 am
Journal · 6 replies
im being pulled out of school. im so angry. i feel like its my health i should be able to decide. but NOOOO ...

Thoughts About Surgery?

By jasonljustice · New reply yesterday at 9:40 am
Discussion in Hypermobile EDS (Type III) · 8 replies
Four months ago, I dislocated and fractured my right shoulder. I also tore several ligaments around my rotator cuff. I have been through six weeks of excruciatingly painful physical therapy with little ...

To all the parents with children with EDS/Dysautonomia

By kaileighmarie · New reply May 14, 2012
Discussion in Parents of children with EDS · 2 replies
My son has not yet been officially diagnosed with EDS/Dysautonomia/Chiari Malformation but has very obvious symptoms. He has an IEP for Autism/sensory processing disorder. I have no clue what to do as ...

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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.