• By TcScott · Posted January 14, 2014
  • 2 replies
  • Hi I live in Utah I was diagnosed with Classical EDS in 2009 I have had help with treating the pain which in my opinion the doctor guesses and puts me on some meds they have no clue what EDS is and mine ...

Daughter's Whip Lash Pain

  • By Duvie · Posted January 10, 2014
  • 20 replies
  • Jo's daughter was a front passenger and her fiance' who was driving was stopped at a red light. While stopped they were rear ended by another car which actually hit them twice, which also pushed them ...

Boost VHC Drink - 530 Calories

  • By Duvie · Posted January 9, 2014
  • 67 replies
  • Thanks to a lovely lady battling ALS, I have found out about this new Boost high- calorie drink to pass on to those struggling to maintain or to gain weight. Check it out online. Take special notice to ...

New infographic: Inspire Rare Disease Health Communities at a Glance

  • By John2 · Posted January 9, 2014
  • 0 replies
  • From: John Novack, Communications Director, Inspire 1/9//13 Dear members, I am writing to share with you a new infographic that Inspire published yesterday: Inspire Rare Disease Health Communities at ...

Something I Found Funny

  • By Duvie · Posted January 9, 2014
  • 12 replies
  • Jo and I had just finished making a grocery list. I had put my coat on, grabbed the keys, and was about to walk out the door, but still in the kitchen, when Duval came out the bathroom. My back was to ...

US Figure Skater Raising EDS Awareness

  • By CRD65 · Posted January 8, 2014
  • 0 replies
  • I saw this on the news tonight. It is the news story at the bottom on the page. /08/us-figure-skating-championships-soch i-olympics-st-louis-ties/4378879 ...

Finally, GI Approval For Placing Stomahesive Powder Into Stoma Around Tube

  • By Duvie · Posted January 7, 2014
  • 9 replies
  • Duvie's last GI follow-up appt was late in the afternoon. It was with a resident Dr who had seen Duvie during his hospital stay while his regular GI Drs were out of town. Duvie was in-house due to an ...

Growing Into Ehlers-Danlos Syndrome

  • By Strege-Mims · Posted January 7, 2014
  • 4 replies
  • EDS has probably been the single most powerful factor in determining the course of my life thus far. It had a significant impact on the development of my personality and my style of relating to other ...


  • By kdg1213 · Posted January 6, 2014
  • 13 replies
  • Anyone have any suggestions or advice for dealing with muscle and joint pain at night ...

Tramadol +amitriptyline

  • By daffodiluk1 · Posted January 2, 2014
  • 4 replies
  • Have osteoarthritis and am waiting for hip replacement, I also suffer from chronic sciatica. I have now been prescribed Tramadol + amitriptyline I am worried that this medication could interact with each ...

Need Rheumatologist who knows something about EDS!

  • By jlmac28 · Posted January 2, 2014
  • 7 replies
  • Hi friends- I am still on the quest to find a rheumatiologist or even internist who knows something about EDS. I have my diagnosis and it's spot on. But now I'm ready for more information and need someone ...

Smell Sensitivity

  • By Alexhunterus · Posted January 1, 2014
  • 18 replies
  • I've recently gotten very sensitive to smells. I first noticed it at the EDS group I was at last month. We meet in a cafe/bookstore and one of the workers cleaned the table behind us and the smell made ...

Proving EDS won't change your life-oh really, guess again!

  • By ezits · Posted December 30, 2013
  • 1 reply
  • Hey CM: Trust me: the 1st, 2nd & maybe the 3rd time PT seems weird! I was 49 the 1st time I went to a Cardio PT Class & when I walked in I did a double look-all those Old Folks! Even the nurse asked if ...


  • By ezits · Posted December 29, 2013
  • 2 replies
  • Changed my photo to show how bundling up innside helps when the windchill bottoms out at minus 23. It's a gorgeous bright sunny day, but it is to cold to enjoy the snow! Um, I'll admit, the Packers ...


  • By Alexhunterus · Posted December 29, 2013
  • 4 replies
  • Last year, I had to leave school because I was missing so much and wasn't able to keep up. I'm technically being home schooled but because of brain fog, I haven't been able to do anything for a while ...

starting a new journey

  • By jparks87 · Posted December 29, 2013
  • 1 reply
  • I have never felt so sure about something in quite some time. my whole life I have been what most would call sickly and super clumsy. I was sick almost every other week, prone to break something or hurt ...

rant/ friends?

  • By Kaylalaprincess · Posted December 28, 2013
  • 5 replies
  • Okay; so i was diagnosed June 5th, 2013 with EDS type 3. and of course my doctor had to explain to me what it was because i've never heard of it. No one ever heard of it. And then i had to start telling ...

Christmas' ups and downs

  • By bendyandiknowit · Posted December 27, 2013
  • 0 replies
  • Between the food, activity, and stress. Christmas was full of pain, tears, and vomiting. It was nice being with family. i have felt awful for a week and it just exploded on Christmas. When will get care ...

EDS and the Traveling

  • By AJP_01 · Posted December 25, 2013
  • 2 replies
  • Traveling is such a joy! (insert sarcasm) I used to take the Greyhound from NYC to DC but had situations like an inconsiderate person putting their seat back and smashing it hard into my delicate knees ...

Thank you, Doctor

  • By Zyp · Posted December 24, 2013
  • 3 replies
  • Back in 1995, when my mysterious, still undiagnosed back pain was becoming unmanageable, I was lucky enough to be treated by a doctor who was one of the first to prescribe opiates for chronic pain over ...

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