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

Don't know what to do

  • By Jewelrymkr · New reply 4:02 am
  • Discussion in General discussion · 1 reply
  • I have 23 symptoms of EDS! I talked to my dr because I also have full body CRPS, and I tried to bring up the possibility of all of my symptoms being tied together to possibly be EDS??!! I talked to my ...

good EDS/Chiari

  • By Lulurice · Posted 2:10 am
  • Discussion in Hypermobile EDS (Type III) · 0 replies
  • We are moving to a new state and have the opportunity to really go anywhere. Two places we are considering are Oregon and Colorado. What I need to know is are there any good to great EDS doctor in those ...

For anyone who has seen dr ericson

  • By Aj474- · New reply 12:00 am
  • Discussion in Hypermobile EDS (Type III) · 1 reply
  • After the ednf conference I made an appt with the Seattle hand surgeon dr ericson. He spoke at the conference about nerve entrapment a in hyper mobile hands etc my appointment is coming to and I am wondering ...

I swear I have Lupus-but not in bloodwork-was diagnosed with EDS/lll

  • By joannaemery · New reply yesterday at 11:49 pm
  • Discussion in General discussion · 27 replies
  • I need help. It is 3:00 am and once again my pain is borderline excruciating. Although it's throughout my body it's mostly in my knees, wrists, ankles and sometimes elbows. After a crazy rides with doctors-mostly ...


  • By kandamom · New reply yesterday at 10:45 pm
  • Discussion in Parents of children with EDS · 1 reply
  • Can anyone recommend a mattress brand or type that has worked well for their child? My daughter is 4 and a half. Thank you ...

Death with Dignity - Recent news item

  • By CentaurInaChinashop · New reply yesterday at 10:36 pm
  • Journal · 52 replies
  • Just saw a story on CNN about death-with-dignity. It isn't on their web site yet, but I found the following links to the story, and to the Oregon law that enables it. (Apparently it is currently legal ...

Baltimore Virtual EDS Clinic

  • By olma · Posted yesterday at 10:04 pm
  • Discussion in General discussion · 0 replies
  • Has anyone been treated by the Baltimore Virtual EDS Clinic yet? I understand a meeting was held in August about EDS, and the clinic "opened." If so, will you please share your contacts with the group ...

Nerve-Block injections or anything that could help!!

  • By ScarlettEagle · New reply yesterday at 8:03 pm
  • Discussion in Pain management · 1 reply
  • I am 18 years old & have type 3 EDS. I experience debilitating pain that hasn't stopped in 5 years. I am sure that many of you understand how frustrating it is. I have tried everything, but have obtained ...

Encouraging Words of Wisdom & Faith

  • By Sunshine__07 · New reply yesterday at 7:52 pm
  • Journal · 7 replies · Photos
  • These are just a few words that really get me through the tough times. They have strengthened me on my most painful days and I thought I'd share; I pray they are a a blessing ...

I'm about 95% sure I have EDS what should I do?

  • By rainbows_26 · New reply yesterday at 7:33 pm
  • Discussion in Newly diagnosed · 4 replies
  • So I'm 14 and ever since I was around 6 I've always remembered having the most intense, painful "growing pains" in my legs and shoulders. I used to cry for hours because it hurt so much, but my parents ...

Moving to New England, need to find ketamine infusion center

  • By etrevino · New reply yesterday at 6:45 pm
  • Discussion in Pain management · 12 replies
  • Hi, My wife suffers from EDS and it's very painful (as you know). Right now the most effective treatment she gets are ketamine infusions at the Shepherd Pain Clinic. However, I have a job offer in Boston ...

Eye Floaters

  • By illuminations · New reply yesterday at 6:15 pm
  • Discussion in Eyes, ears, nose and throat · 18 replies
  • Just curious if anyone experiences these and what the significance is. Back when I first became privy to EDS and was reading everything I could find, I remember seeing that these can be a precursor to ...

THANK YOU. Thank you !

  • By jenryannyc · New reply yesterday at 1:57 pm
  • Discussion in Hypermobile EDS (Type III) · 9 replies · Photos
  • My journey to a diagnosis, and now treatment, has taken me nearly 27 years. Once my GP suspected EDS or a related disorder, two months later I went to a cardiologist who gave me a definitive EDS type ...

Thumb to forearm: big deal?

  • By IntentionalOblvn · New reply yesterday at 10:58 am
  • Discussion in General discussion · 52 replies
  • Hi all - I've been wondering how important this sign is for diagnosis since it's in the scale. Also, how many out there can actually touch thumb to forearm? (Never did as a child and I didn't think I ...

any information?

  • By Nina-V · New reply yesterday at 10:35 am
  • Discussion in Hypermobile EDS (Type III) · 4 replies
  • I've been recently diagnosed with type 3 EDS, I also have a Chiari malformation, which Doctors believe is causing my nausea, and vomiting. I was wondering if there is anybody on here with a similar problem ...

new symptom?

  • By hails1115 · New reply yesterday at 10:09 am
  • Discussion in General discussion · 6 replies
  • Every night when I lay down and close my eyes, it seems as if the room is spinning, as if I'm not actually lying there... Occasionally I have tried moving my foot to sort of let myself know I'm indeed ...

Genetic Testing (EDS, Marfan's and OI)

  • By butterfly822 · New reply yesterday at 9:11 am
  • Discussion in General discussion · 7 replies
  • Hi Fellow Zebras, My pcp and I talked recently and wanted to go with the knowledge is power mentality and finally do genetic testing bc the many broken bones over my lifetime and all of my other issues ...

What an ECHO got to do with it

  • By M5646 · New reply yesterday at 8:04 am
  • Discussion in Artery / heart / cardiovascular issues · 8 replies
  • UW Genetics wants an updated echo. I saw my cardio Tuesday and asked him to order one and he said no problem as that is one of many tests that is coming to figure out this chest pain. He also 'seemed ...

social security

  • By Jack254 · Posted yesterday at 2:01 am
  • Discussion in Hypermobile EDS (Type III) · 0 replies
  • Can anybody tell me about social security in texas for ehler danlos syndrome is hard to get ...

Joint Hypermbility all new to me

  • By alebeau09 · New reply October 18, 2014
  • Discussion in Hypermobile EDS (Type III) · 3 replies
  • Hello, I am new to all of this! I am having a hard time right now, as I was just diagnosed with Joint Hypermobility. I have been in chronic pain for over six years now, and I thought it was normal from ...

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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.