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

Recurring pains

By Connorf95 · New reply 4:51 pm
Discussion in Vascular EDS (Type IV) · 5 replies
Hi, I'm Connor (17yrs old) and I've been suffering from really irritating, throbbing and painful feelings in the lower-left, right and centre of my abdomen. They hurt quite frequently and it gets discomforting ...

How many c-sections have you women had?

By asr · New reply 4:40 pm
Discussion in Classical EDS (Types I and II) · 1 reply
Pregnant with my 3rd child, have had c-sections for the two children i've had. Just interested to know how many c-sections is possible for classical EDS, This pregnancy i've definitely felt more pains ...

Don't Delay-Early Registration Prices Go Up Soon!

By SlapASmileOn · Posted 4:11 pm
Discussion in General discussion · 0 replies
If you have been putting it off, now is the time to register. EDNF Learning Conference Early Registration ends May 28 and prices go up May 29! http://bit.ly/YquVpN EDNF's Learning Conference is August ...

Laser Spine Institute

By lara17pla4 · New reply 3:09 pm
Discussion in Newly diagnosed · 4 replies
Hi Family, I am newly diagnosed last November with type 3 and the effects on my daily life and caring for my 2 yr old son are becoming more and more difficult due to my lower back. The MRI showed two ...

Any adaptive ways to play guitar with EDS? + Other Music w. EDS issues!

By Talitha_K · New reply 2:59 pm
Discussion in General discussion · 14 replies
Dear EDS patients who are also musicians: I'll be short and sweet as poss. - and if you know me, that's a miracle! ;-) Lifelong musician here and been writing songs more than half my life. Music is my ...

CSF Leak and Fluid in my Mastoid Sinus

By Kris4444 · New reply 2:13 pm
Discussion in General discussion · 7 replies
I KNOW this is what it is but none of the doctors believe me. A year ago this past October I had been having a MAJOR headache that could not be relieved by NSAIDS, migraine meds or Tramadol. This headache ...

anyone see this

By ahhforgetit · New reply 1:58 pm
Discussion in EDS awareness · 7 replies
http://on.aol.com/video/shakiras-shockin g-talent-517789393?hp=1&playlist=127161& icid=maing-grid7|main5|daily-buzz6|sec7_ lnk1|317369 ...

Dallas-Based EDS Support Group April Meeting

By Strege-Mims · New reply 1:30 pm
Discussion in Local support groups · 2 replies
The DALLAS-BASED EDS SUPPORT GROUP will be having their monthly meeting on APRIL 14th, 2013, 2:00 PM UNTIL 4:00 PM. This will be an open meeting, in part. We will use some of the time to review our progress ...

Sandals and flip flops with BUILT-IN custom orthotics!

By suespa · New reply 1:25 pm
Discussion in EDS awareness · 6 replies
I was visiting the podiatrist with my daughter and asking the perennial question about what to do in the summer with orthotics fitting into sandals. I thought in this day and age I might try to 3D print ...

Need help with denial/acceptance

By JPlace · New reply 12:56 pm
Discussion in General discussion · 17 replies
Philosophically, I've really been having a hard time lately. Ehlers-Danlos is changing who I am. I used to "pride" myself on being dependable, reliable & competent. Now, I dislocate and miss work, my ...

"Embarrassed to be Sick" published on KevinMD

By Zyp · New reply 11:58 am
Journal · 14 replies
With a different title, this Inspire journal post I wrote was just published in the widely read medical blog, KevinMD: "In today’s society, chronic illness is viewed as a personal failing" http://www.kevinmd.com/blog/2013/05/toda ...

REACHING OUT

By Mystic2013 · New reply 10:42 am
Discussion in Parents of children with EDS · 5 replies
Hey there. I am so amazed at my 13 year old daughter's ability to keep going at it. Every evening she has had rt. Shoulder inferior/posterior subluxation/dislocation (it makes her scapula look like she ...

Panther Math Paper App

By helplessfeeling · New reply 9:32 am
Discussion in General discussion · 1 reply
Was wondering if anyone has used Panther Math Paper App for Algebra? My daughter dislocates while writing (math is the worst)! We are looking for an app that would minimize her writing & we have spent ...

Pain Medicine

By helplessfeeling · New reply 9:30 am
Discussion in General discussion · 19 replies
My daughter (14 years old) has finally agreed to start taking something for pain. She has been prescribed Tramadol, but has had an alleregic reaction to it. On one other occassion she had taken tylenol ...

Histimine Intolerance? MAST Cell.

By dispatchninja · New reply 1:04 am
Discussion in Diet and nutrition · 3 replies
Hi everyone, I have EDS 3 with on going circulation, nervous system, various other issues , and I strongly suspect MAST Cell to be behind a lot of this issues. Has anyone ever gotten tested specifically ...

Prolotherapy for EDS injuries

By Ayleeann · New reply yesterday at 10:42 pm
Discussion in Hypermobile EDS (Type III) · 4 replies
I started prolotherapy injections into my left knee in January. Has anyone tried this? Insurance won't cover it because its considered alternative. I have EDS III and currently suffering from a torn meniscus ...

Chronic Knee Dislocations

By RobbieC · New reply yesterday at 6:30 pm
Discussion in Hypermobile EDS (Type III) · 12 replies
My daughter has EDS Type 3. Her biggest challenge is her knees constantly dislocating. We have tried so many different braces and none of them seem to keep her kneecaps from subluxating/dislocating mainly ...

Venting

By ThaliaThinks · New reply yesterday at 3:17 pm
Discussion in Newly diagnosed · 8 replies
Let me say first that I have not been diagnosed with EDS. In fact just yesterday I had a rheumatologist tell me that I was being ridiculous, that if I had vasular EDS, I'd be dead right now. I told him ...

Cincinnati Zebras- Special Guest! Tuesday May 7th/ also Teen gathering!

By QsMama · New reply yesterday at 12:59 pm
Discussion in Local support groups · 2 replies
May 7th is our next meeting - originally it was Teens/parents, but now there is an Important Update! From Amy Schulze: "IMPORTANT UPDATE!! Our meeting on May 7th will have a special guest speaker: Dr ...

Dr. Brad T Tinkle in Chicago

By mrs · New reply yesterday at 12:23 pm
Discussion in General discussion · 4 replies
Has anyone ever seen Dr. Brad T Tinkle in the Chicago area? He is the closest to where my daughter lives and she is getting no where with the doctors in Missouri. Would love to talk to anyone who has ...

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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.