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

Plea for help w/ MYSTERY headaches

  • By jjgirl67 · New reply 7:04 pm
  • Discussion in Hypermobile EDS (Type III) · 3 replies
  • Feel a bit guilty to be posting again but my most pressing problem to do w/ headaches is still a mystery. If you saw my recent post, you know the headache specialist concluded my "system is just overly ...

Need some guidance

  • By AlaskaSmiles · New reply 6:57 pm
  • Discussion in Newly diagnosed · 2 replies
  • My son's podiatrist recently diagnosed EDNF based on symptoms. Does anyone know of resources in Alaska for more definitive diagnosis and treatment? Thank you ...

Today's insanity

  • By Deaman · New reply 6:56 pm
  • Journal · 5 replies
  • Well, I said I'd write in this journal regularly so here I am. It's mid afternoon now, and my day isn't going too badly. It started in the normal way. My husband handed me a cup of tea in bed. I know ...

whew.. pain management

  • By hails1115 · New reply 6:47 pm
  • Discussion in Hypermobile EDS (Type III) · 2 replies · Photos
  • My original pain doctor left town.. So I went to a new pain doctor last Tuesday.. I waited two hours to see him.. Which we all know is hard for anyone with EDS to do... This doctor spent less than ten ...

I'm Tired of being Tired!

  • By maggiemays22 · New reply 6:40 pm
  • Discussion in General discussion · 21 replies
  • I have EDS and my biggest problem is always being tired. I can sleep from 10pm to 11 am and I wake up and I'm just soo tired. By the time I'm done with breakfast I'm ready to go back to bed. I sleep through ...

Hoarders - Feline Edition

  • By CentaurInaChinashop · New reply 6:13 pm
  • Journal · 3 replies · Photos
  • Hopefully, this will be coming this fall to TLC. (and it would probably be better than half of their other shows). photo hoarder-cats4_zpsnzdiowse.jpg photo hoarder-cats1_zpsz0eztveb.jpg photo hoarder-cats6_zpsc9znn482.jpg ...

Desperate for answers for my 21 year old son

  • By bbeds · New reply 6:13 pm
  • Discussion in Hypermobile EDS (Type III) · 14 replies
  • Hello, I would like to see if there are any recommendation form other EDS sufferres or their family members.... We are desperate. We have a very difficult situation. My son has been suffering for the ...

Happy Canada Day

  • By CentaurInaChinashop · New reply 5:20 pm
  • Journal · 2 replies
  • Hope all our Canuck friends are having a great holiday, and for those who aren't getting the day off, here is a little bit of humour debunking some of our Great White North stereotypes. ...


  • By tracylb13 · New reply 3:45 pm
  • Discussion in Classical EDS (Types I and II) · 5 replies
  • So, I have been experiencing a lot of back pain lately. I am doing physical therapy to try and build up some more muscle, but my whole entire back just feels like it needs to be cracked...everywhere ...

EDS: "Doctors now believe the prevalence is 1/100 (in print!)

  • By Rache · New reply 3:35 pm
  • Discussion in General discussion · 17 replies
  • Okay, so...many {if not} *most of us* here have always "known" that the frequency of..the [actual] numbers of people with EDS is so very much higher than most articles which do include statistics often ...

7 yr old suspected H-EDS in Rhode Island

  • By jshriver · New reply 3:22 pm
  • Discussion in Parents of children with EDS · 2 replies
  • Hello, I am working with a family in Rhode Island who has a 7 yr old daughter with suspected H-EDS, but no dx as of yet. Where can I recommend they go for an evaluation and actual diagnosis? The child's ...

a wee bit of zebra humour (seen at end of news program)

  • By Rache · Posted 2:45 pm
  • Discussion in Humor · 0 replies
  • a very short video of zebra 'singing for supper?' E ...

Having to apologize for not having cancer

  • By barbmacmac · New reply 1:55 pm
  • Journal · 30 replies
  • No one I know has ever even heard of EDS. It is the most isolating condition I know of. I had to quit being a dental assistant because of my condition. My hips were the first to go. Then my hands. I could ...

Black teeth in my 3 grandchildren

  • By MeiMei · New reply 12:52 pm
  • Discussion in Dental issues / TMJ · 6 replies
  • I am very worried about my 3 grandchildren that have black stained teeth around their gums. I brushed the eldest boy's teeth a few weeks ago and they bled. I don't know if I should post this here on Ehlers ...

Dr. Diana Driscoll Research Presentation

  • By -Beth- · New reply 12:51 pm
  • Discussion in General discussion · 8 replies
  • Hi Everyone! I am sure you are familiar with Dr. Diana Driscoll and her groundbreaking research - she is the brains behind the Driscoll Theory, which has recently been revised and updated. (It is available ...

Children w/ H EDS

  • By jjgirl67 · New reply 12:45 pm
  • Discussion in Hypermobile EDS (Type III) · 4 replies
  • Curious to know from those of you w/ kids w/ h-eds what you're able to do for them to help them along, especially in dealing with fatigue, pain and in terms of a plan to lessen or slow joint damage. I ...

Anyone can recommend a good EDS specialist in NYC area?


Morning blues... support suggestions?

  • By CamoZebra · New reply 11:45 am
  • Journal · 1 reply · Photos
  • We all have good ones and bad ones, unfortunately this morning is not one of the better ones. I have kids to care for, i have work to get done... now if my hips would just stay in their right places ...

looking for good doc in portland, oregon or West coast


Wrongfully Accused

  • By Grants-Mimi · New reply 10:42 am
  • Discussion in General discussion · 4 replies
  • Three years ago, my daughter was accused of 1st degree felony abuse after my Grandson was 18 months old and had 12 breaks. Madison County KY refused to allow genetic testing, even with 4 specialist doctors ...

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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.