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

Happy Easter - Fun Pics

  • By CentaurInaChinashop · New reply 11:18 am
  • Discussion in Humor · 5 replies
  • Looking forward to the long weekend with my sweetie Rache, and thought it was time for a few smiles. First, Happy Easter photo easterbunny_zps44020361.jpg with a side of Therapy photo therapy_zps39812c42.jpg ...

stronger because of trials

  • By assurance · New reply 10:58 am
  • Journal · 2 replies
  • I just realized today how so many of us that are going through a lot with EDS are so strong in many ways. God has given me the strength and grace to keep going forward and I rejoice in this. My life is ...

bladder issues

  • By asunda2 · New reply 10:19 am
  • Discussion in Hypermobile EDS (Type III) · 4 replies
  • In another post Laurie 71 mentioned having to have her urethra stretched. That piqued my interest. Several members of my family were born with deformed bladders. Coincidentally all three of us were also ...

Information for patients re: ACA Exchange Plans

  • By Cotntail · Posted 10:12 am
  • Discussion in General discussion · 0 replies
  • Ya'll probably already know that I work for a large Ophthalmology practice in Austin, TX. Well, it's my business to know about healthcare insurance carriers. Yesterday I was at meeting at the Texas Medical ...

BLUE feet with Red toes????

  • By joannaemery · New reply 9:58 am
  • Discussion in Newly diagnosed · 3 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 ...

School, exams and revision.

  • By emilyrose_ · New reply 9:51 am
  • Discussion in Hypermobile EDS (Type III) · 4 replies
  • Hi, I'm 16 and I have my A Level exams coming up in less than a month. I'm really struggling to revise because I'm finding it hard to do much of it. I struggle to keep up with school anyway so not revising ...

Pain Clinic in Bath, England

  • By JustMe29 · Posted 9:33 am
  • Discussion in Pain management · 0 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 ...

Serious crunching in neck

  • By joannaemery · New reply 9:30 am
  • Discussion in Hypermobile EDS (Type III) · 12 replies
  • I was recently diagnosed with EDS lll and I have Cervical Spondylosis with nerve pinching. The pain and loss of mobility is getting worse. The crunching is getting really bad. So far I've had multiple ...

Denied for a tattoo?

  • By instrumental12 · New reply 9:29 am
  • Discussion in Classical EDS (Types I and II) · 10 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 ...

Back Pain Emergency

  • By Lucy_X_Yyvan · New reply 7:46 am
  • Journal · 28 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 ...

Back pain like no other

  • By kaytdemp · Posted 2:27 am
  • Journal · 0 replies
  • Recently I dyed my hair red and I love it well I had to dye my roots about 3 days ago. Well while in the shower to rinse out the color I bent over to rinse the under layer of hair (I have the hose type ...

2014 EDNF Conference -- Early Bird Prices only until May 6th!

  • By SlapASmileOn · New reply yesterday at 11:32 pm
  • Discussion in General discussion · 1 reply
  • That's right! Only 3 weeks left to get early bird conference rates! So register now. 2014 EDNF Conference in Houston, Texas on July 10-12, 2014! Read here all about it: ...

Dr Chopra on Pain Management - Tonight!

  • By Bluebirds_8 · New reply yesterday at 9:24 pm
  • Discussion in General discussion · 2 replies
  • I'm excited about tonight's topic, especially since pain mgmt seems to be such an issue for many of us, and hopeful that it will go smoothly now that all the kinks in the host program are hopefully worked ...

Bilateral Flank Pain

  • By kellygremlin · New reply yesterday at 7:58 pm
  • Discussion in General discussion · 5 replies
  • Hi. My 16 yr. old son was outside kicking the football and running and catching it for hours on end (as usual)! All the sudden his sides started hurting really bad. He came inside and sat down which helped ...

Decided to post my entire story (mostly)

  • By kdg1213 · New reply yesterday at 6:38 pm
  • Journal · 25 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 ...

Tramadol, Prozac HOLY COW

  • By Antje1863 · New reply yesterday at 5:50 pm
  • Discussion in Hypermobile EDS (Type III) · 9 replies
  • I guess this could be ' pain management', but it's pain management for EDS III. ( little side note- for some reason, reading through my son's notes from his rheumatologist, she mentioned considering Classic ...

Carcinoid Tumors

  • By CrystalRainbow · New reply yesterday at 4:26 pm
  • Discussion in Newly diagnosed · 9 replies
  • Hello! I am a newbie here, but was diagnosed with a Carcinoid tumor in my stomach about a year ago. So far I have been " lucky". It was well differentiated, and "benign". However, I am being monitored ...

Subulaxed joints

  • By SNOZWANGER · Posted yesterday at 2:44 pm
  • Discussion in Bones, joints and muscles · 0 replies
  • My daughter has subulaxed her knee and damaged all the tissue surrounding the knee we have been told that it will take 3months for the knee to be 100% . Does any one no if this is a one off or a regular ...

help me find a dr please

  • By Annababy · New reply yesterday at 2:33 pm
  • Discussion in Other types of EDS · 1 reply
  • Im 36 and I live in santa clarita ca, My life has become nothing but pain and disappointment. I haven't had a dr. for 5 or 6 weeks and when I tried to find a new dr. Its very difucult to not get treated ...

EDS in the Washington Post

  • By SlapASmileOn · New reply yesterday at 1:27 pm
  • Discussion in General discussion · 8 replies
  • EDS article in the Washington Post: "When Flexible Becomes Too Flexible", by Jeff Leen ealth-science/when-flexible-becomes-too- flexible/2014/03/07/4d669e30-69c5-11e3-a ...

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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.