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

we have to make this known

  • By jenbowhay · Posted 2:00 am
  • Journal · 0 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 ...

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 ...

How to explain pain from hypermobility to friends.

  • By meggles_57 · New reply yesterday at 10:08 pm
  • Discussion in Pain management · 4 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 ...

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 ...

Edler-Danlos Medical Bracelet

  • By GingerRose · New reply yesterday at 9:29 pm
  • Discussion in Hypermobile EDS (Type III) · 6 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 ...

TMJ and hard cervical collar

  • By loosiegoosie · Posted yesterday at 8:39 pm
  • Discussion in General discussion · 0 replies
  • 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 ...

Ortho surgeon in Boston area that understands EDS

  • By Dicon · Posted yesterday at 1:28 pm
  • Discussion in General discussion · 0 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 - Make Zap Bags

  • By CentaurInaChinashop · New reply yesterday at 1:22 pm
  • Discussion in Pain management · 15 replies
  • So, I made Rache another batch of Zap-bags (I think the original version that we bought were called Magic Bags), and thought it might be worthwhile to put together a how-to page for those who may be interested ...

Disability Approved

  • By bmilestx · New reply yesterday at 11:29 am
  • Discussion in Hypermobile EDS (Type III) · 5 replies
  • Greetings fellow Zebras! I was this week approved for my Disability (SSDI). It feels like a mountain of weight of concern, doubt and financial worry for the future was lifted from my EDS shoulders! Story ...

Physical Therapists in San Diego

  • By Schooner21 · New reply yesterday at 7:02 am
  • Discussion in Classical EDS (Types I and II) · 2 replies
  • Hi, I partially tore my achilles about 10 weeks ago now and need to transition into physical therapy ASAP. I am new to the San Diego area and was wondering is anyone has any suggestions. I have Classical ...

Diagnosed today, where do I start?

  • By DUDLMOM · New reply yesterday at 6:53 am
  • Journal · 13 replies
  • Hi everyone. I don't know where I even start. I've always known I had hyper-mobile joints and was the girl that could do tricks but what harm could that do? Oh boy! I thought today's visit was a diagnosis ...

Hair Loss

  • By jenbowhay · New reply April 22, 2014
  • Discussion in Newly diagnosed · 10 replies
  • Hi Moms- My daughter (on the right) is losing her hair. We have seen a dermatologist and Endocrinologist. We got her hormones and special shampoo. And a DO put her on thyroid, but nothing helps. Her hairline ...

help me find a dr please

  • By Anna_EDS_nightmare · New reply April 22, 2014
  • Discussion in Other types of EDS · 2 replies
  • 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 ...

Boost VHC Drink - 530 Calories

  • By Duvie · New reply April 22, 2014
  • Journal · 72 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 ...

Odd Question

  • By cjnamaste · New reply April 22, 2014
  • Discussion in General discussion · 6 replies
  • Happy Easter to those of you who celebrate Christ! I have an odd question that I've been thinking about for some time now. Humor me, if you can. I've always been very sensitive to energy changes, energy ...

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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.