Ehlers-Danlos National Foundation Support Community

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How can I post a few images?

By cnb · Posted 2:22 am
Discussion in General discussion · 0 replies
I found some great pain related images, I'd love it if I could chare them- the pain cycle at http://rachicks.com/ra-pain-chronic-pain -is-a-vicious-cycle/ fits for us too, and I loves the top 10 things ...

Ehlers Danlos and Tattoos

By JAY_ARE_TEE · New reply 2:18 am
Discussion in Classical EDS (Types I and II) · 11 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 ...

Prolotherapy IS an option!!!

By deborahatx · New reply 2:12 am
Discussion in Hypermobile EDS (Type III) · 67 replies
I am writing this because there are so many people (and by people I mean your doctors, educators, and fellow EDS's) that are uneducated about and have no experience with Prolotherapy . (There are doctors ...

Fantastic Pain in EDS Document!

By SlapASmileOn · New reply yesterday at 6:33 pm
Discussion in Pain management · 23 replies
Mark (a.k.a. EDSerMark) has written for EDNF an incredibly comprehensive article describing the pain in EDS (chronic acute pain...I love it!) and options available for addressing that pain. It also includes ...

Does anyone have gum recession?

By IamwhatIam · New reply yesterday at 4:05 pm
Discussion in Hypermobile EDS (Type III) · 11 replies
I just noticed my son's gum is receding on his middle left bottom tooth, so much so that I fear he may either loose it or need an operation. My mother had EDS and lost all of her teeth. I hope my little ...

ANYONE IN KENT UK?

By sammie1975 · New reply yesterday at 1:14 pm
Discussion in Hypermobile EDS (Type III) · 4 replies
would be nice to be in contact with Eds sufferers in Kent, I'm also on FB. If you'd like to share info etc please message me xx ...

Difficulty swallowing

By IamwhatIam · New reply yesterday at 10:37 am
Discussion in Hypermobile EDS (Type III) · 5 replies
Does anyone else have the feeling when they are laying down that their throat is slightly closing, and feel the need to swallow constantly which seems like it helps open it temporary ...

Summer Camp for our Kids

By mom2s · New reply yesterday at 9:36 am
Discussion in Parents of children with EDS · 5 replies
I have been in touch with a camp program that is willing to take our kids. The camp is for kids 7-15 and is free for the week if your child is accepted. Here is the link to the site http://www.thecenterforcourageouskids.or ...

Irma 09

By irma09 · New reply yesterday at 9:26 am
Discussion in Newly diagnosed · 2 replies
My 28 year old grand son was just diagnosed with PVNS, which is a nasty reddish orange fluid within the lining of the knee. The Dr. did ortoscopy thinking it was a tumor that he could remove, as well ...

To all the parents with children with EDS/Dysautonomia

By kaileighmarie · New reply yesterday at 9:13 am
Discussion in Parents of children with EDS · 3 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 ...

from the view of the zebra

By caribou11 · New reply yesterday at 8:10 am
Discussion in EDS awareness · 8 replies
I made a video for EDS Awareness month... its EDS from my point of view... just figured I'd share :) It's called, "I am the face of a Zebra" http://youtu.be/9jHJxHnR-yA ...

parent of an adult child with EDS

By lwyour · New reply yesterday at 1:44 am
Discussion in Parents of children with EDS · 25 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 ...

Dr. Henderson surgery

By MeiMei · New reply May 19, 2012
Discussion in General discussion · 8 replies
I went to see Dr. Henderson in February. He said I should take out my C 3-4 and 4-5 and cut c2. It is a big surgery so now I am going to see Dr. Francomano to see what she thinks. My other doctors said ...

Houston Texas EDS Support Group

By jvillarreal1011 · New reply May 19, 2012
Discussion in Local support groups · 9 replies
The Houston EDS Support Group is having our third meeting on May 19 at McGovern-Stella Link Neighborhood Library, 7405 Stella Link, Houston TX 77025. this will most likely be our permanent home and we ...

Support group in Philadelphia, PA area

By michellej · New reply May 19, 2012
Discussion in Local support groups · 20 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 ...

Seattle meeting set

By Cardin · New reply May 19, 2012
Discussion in Local support groups · 6 replies
Our next meeting will be at the University of Washington medical center on April 21st @ 1pm. It will be hosted by Dr. Peter Byers and Dr. Mitzi Murray ...

Upcoming Boston Group Meeting

By zebra-rose · New reply May 19, 2012
Discussion in Local support groups · 10 replies
I do not recall which thread someone was asking, so I am writing in a new discussion with info for the next Boston group meeting... We now have a list of professional providers familiar with EDS (compiled ...

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

By Smilemommy · New reply May 19, 2012
Discussion in EDS awareness · 16 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 ...

Help finding good shoes!

By ChildOfJobsGod · New reply May 19, 2012
Discussion in Bones, joints and muscles · 36 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 ...

Addison's Disease

By MommaZebra · New reply May 18, 2012
Discussion in General discussion · 13 replies
My brother-in-law was just was diagnosed with Addison's disease. The is a genetic disorder so it was recommended that my children be tested. My son was just diagnosed with vascular EDS. Has anyone heard ...

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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.