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

Passing it on to children...

  • By CijiS · New reply 4:01 pm
  • Discussion in General discussion · 1 reply
  • I have not been officially diagnosed but I meet both the major and minor criteria for Vascular EDS. I have been waiting for my genetics appt since October and it is in about 5 weeks. I have a question ...

Organ failure

  • By doncoover · Posted 3:41 pm
  • Journal · 0 replies
  • I would be interested to know how many people like myself have had organ failure due to Ehlers-Danlos Syndrome & have received a donated organ ...

FDA issues warning over corticosteroids injections in spine

  • By Cotntail · New reply 3:29 pm
  • Discussion in General discussion · 3 replies
  • Today's AMA Morning Rounds newsletter had these links (below) regarding new warnings issued by the FDA. So many of us have spinal issues that I thought it might be useful to discuss this with your doctor ...

we have to make this known

  • By jenbowhay · New reply 3:21 pm
  • Journal · 6 replies
  • My daughter diagnosed herself and all her doctors told her she was crazy- she was TOO pretty. Alas, this disease took her mind, her spirit, her beauty, her friends: so fast. We just had a positive diagnosis ...

Ortho surgeon in Boston area that understands EDS

  • By Dicon · New reply 2:46 pm
  • Discussion in General discussion · 2 replies
  • Can anyone recommend an Ortho Surgeon in the Boston area who understands EDS? I am having difficulty with an unstable shoulder that is causing significant vascular issues. Any help is greatly appreciated ...

How to explain pain from hypermobility to friends.

  • By meggles_57 · New reply 2:45 pm
  • Discussion in Pain management · 6 replies
  • I was newly diagnosed with hypermobility syndrome. With this came lots of excitement as my whole life makes sense now. I don't have it near as bad as many people on here talk about, so I feel a bit selfish ...

Too much for friends?

  • By Mander9888 · New reply 2:43 pm
  • Discussion in EDS awareness · 6 replies
  • Just recently my best friend broke up with me. I say it this way because we weren't just friends... We were sisters, bosom buddies, absolutely connected. My daughter looked to her as a second mother ...

Guys I don't even know :P

  • By KristyKit · New reply 1:30 pm
  • Discussion in Hypermobile EDS (Type III) · 3 replies
  • Hello. So I'm super new to this website and don't know a lot about this, so bare with me xP I have know that I have EDS for about 5+ years now, but I've had the pain for even longer. I don't really know ...

EDS pain and arthritis pain? locked spine is surgery worth it?

  • By DUDLMOM · Posted 1:20 pm
  • Discussion in Hypermobile EDS (Type III) · 0 replies
  • I have had pain for so much of my life and so many injuries I'm a bit confused. Have my joints been subluxing all the time which is the pain I'm feeling or is it arthritis pain? I live in pain everyday ...

EDS and Dysgraphia

  • By Benningtonclan · New reply 12:55 pm
  • Discussion in Parents of children with EDS · 13 replies
  • I was just wondering if there has actually been a scientific link between EDS and people with dysgraphia? If so, where might I find that info? Both of my son's have EDS. As well as myself. My eldest son ...

walking out in faith,and obedience

  • By assurance · Posted 11:14 am
  • Journal · 0 replies
  • My dear sisters out there. I know it is a,reality that we live daily with ain and uncertainties of what the future will hold for us but please do not let this crazy EDS get the best of you, especially ...

TMJ and hard cervical collar

  • By loosiegoosie · New reply 9:27 am
  • Discussion in General discussion · 1 reply
  • I have had severe TMJ problems for about 30 years now. I now also have a c2 vertebra that does not play nicely with others (it subluxes and I have a c3-c6 fusion), and a soft collar is no longer enough ...

Edler-Danlos Medical Bracelet

  • By GingerRose · New reply 9:10 am
  • Discussion in Hypermobile EDS (Type III) · 7 replies
  • Someone close to me has EDS type 3, it took eight years to find out exactly why she had these medical problems. About five years ago a Dr. at the Cleveland Clinic knew what was wrong with her. Since then ...

Two Heart Transplants & a Kidney Transplant

  • By doncoover · New reply 1:33 am
  • Journal · 2 replies
  • I was born almost 70 years ago with Ehlers-Danlos Syndrome. I knew as a child I had hyper-elastic skin which would bruise, cut, tear, and traumatize very easily. I knew what to expect due to the fact ...

Pinching in spinal chord/Cervical Spondylosis

  • By joannaemery · New reply 12:54 am
  • Discussion in Neurologic issues · 36 replies
  • Does anyone know anything about the neck? I just had an upright MRI and the Neurologist said I have pinching in the spinal chord on multiple levels and Cervical Spondylosis. He said no Chiari. This would ...

Must See! Google's: My Beautiful Earth pictures!

  • By Rache · New reply yesterday at 11:02 pm
  • Discussion in General discussion · 5 replies
  • sorry, folks I meant to post this yesterday (I forgot) This link available to click on, just below where you would type 'into' Google (apparently they have already changed what is in that spot) For those ...

Bilateral Flank Pain

  • By kellygremlin · New reply yesterday at 10:53 pm
  • Discussion in General discussion · 11 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 ...

Abdominal Aortic Aneurism

  • By suncloud · New reply yesterday at 10:49 pm
  • Discussion in Hypermobile EDS (Type III) · 11 replies
  • Hi everyone. I wondered if anyone here has had an abdominal aortic embolism due to eds or otherwise. I would be very grateful for any replies or advice on this. Thank you in advance xxx ...

A new story i wrote tell me wat ya think!!(:

  • By MinionFreak2014 · New reply yesterday at 10:10 pm
  • Journal · 7 replies
  • God is always there! Do you ever feel like you’re alone? You’re not worth it? Or that nobody loves you? Well stop thinking that because its not true, God is always there, he thinks you’re worth it and ...

Pilates for the hyper mobile??

  • By Lookingforhope123 · New reply yesterday at 10:05 pm
  • Discussion in Hypermobile EDS (Type III) · 10 replies
  • I have gotten pretty into Pilates this year since it seems to be THE ONLY excersise which could potentiall help my EDS rather than hurt it. HOWEVER I know some adjustment a must be made. I have strained ...

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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.