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heath care won't cover gentic testing at hopkins....now what

jparks87
  • By jparks87 · New reply 4:16 am
  • Discussion in Hypermobile EDS (Type III) · 5 replies
  • So i finally have my rhuemtaologist visit and he agreed that i have a lot if not all the symptoms of eds type 3. He reffered me to the genetics clinic at Johns Hopkins with dr. Howard Leavy. I was excited ...

keloid scar and itching

butterflygirlbecky
  • By butterflygirlbecky · New reply 4:04 am
  • Discussion in Dermatology / wound healing · 1 reply
  • I have a large keloid scar on my shoulder from a punch biopsy. It's almost a year old but sometimes it itches so bad. I put lotion on it and it seems to help but does anyone know a more permanent solution ...

Back Pain Emergency

Lucy_X_Yyvan
  • By Lucy_X_Yyvan · New reply 2:44 am
  • Journal · 30 replies
  • How do you guys deal with the back pain the comes along with the winter cold? My entire back is inflamed and stiff, and it hurts to move or breathe, really. The pain is becoming unbearable, and I can't ...

What should you do after diagnosis?

IrenaSendler
  • By IrenaSendler · New reply 1:45 am
  • Discussion in Parents of children with EDS · 2 replies
  • Hi all. I need some advice. My 8 year old son has been diagnosed with EDS Hypermobile type just this past June (almost a year ago). It's mild but he subluxes. Lately, when doing different sports he has ...

Is there a relation between dysautonomia and pseudo-seizures?

dreamn-jane
  • By dreamn-jane · New reply 12:56 am
  • Discussion in Neurologic issues · 84 replies
  • I just experienced a seizure-like experience for the first time ever. For about a minute, I lost all control over my arms, legs, and hands. It was terrifying. I was told by a physician that this was likely ...

Anyone with EDS in Florida?

michellemarie33
  • By michellemarie33 · New reply 12:55 am
  • Discussion in Hypermobile EDS (Type III) · 2 replies
  • Hello Wondering if there are others in Florida. Newly diagnosed and my children as well. Looking for others who understand. Thanks Michelle ...

Kansas City Support

kmnkdz
  • By kmnkdz · New reply 12:00 am
  • Discussion in Local support groups · 1 reply
  • Spring is around the corner!! If you are itching to get out a bit and live in the Kansas City area, please join us this Saturday, March 15th! The Kansas City EDS Support Group will be meeting at 3pm on ...

BLUE feet with Red toes????

joannaemery
  • By joannaemery · New reply yesterday at 5:14 pm
  • Discussion in Newly diagnosed · 4 replies
  • My daughter was newly diagnosed with EDS/lll and POTS. She is 16. We are still figuring things out. For 12 days she a=has had a Post Viral Chronic Fatigue flare-up from Mono 3 years ago. She always gets ...

Pain Clinic in Bath, England

JustMe29
  • By JustMe29 · New reply yesterday at 5:13 pm
  • Discussion in Pain management · 5 replies
  • Anyone from the UK? I was listening to the radio show about chronic pain on BBC 5 Live this morning and heard them talking about the pain clinic in Bath. I was just wondering if anyone had been to it ...

EDS + Autoimmune Disorder?? Recognize These Sx?

mlynn129
  • By mlynn129 · New reply yesterday at 4:03 pm
  • Discussion in General discussion · 5 replies
  • Anyone with EDS ever been thought to have had/do have in addition to EDS any kind of autoimmune disorder? If so, what is it and what're your symptoms?? -My pcp is having me get some blood tests done to ...

stronger because of trials

assurance
  • By assurance · New reply yesterday at 10:39 am
  • Journal · 5 replies
  • I just realized today how so many of us that are going through a lot with EDS are so strong in many ways. God has given me the strength and grace to keep going forward and I rejoice in this. My life is ...

bladder issues

asunda2
  • By asunda2 · New reply yesterday at 8:52 am
  • Discussion in Hypermobile EDS (Type III) · 6 replies
  • In another post Laurie 71 mentioned having to have her urethra stretched. That piqued my interest. Several members of my family were born with deformed bladders. Coincidentally all three of us were also ...

Dallas Support Group has a Combination Meeting April 13th, 2014

Strege-Mims
  • By Strege-Mims · New reply yesterday at 5:01 am
  • Discussion in Local support groups · 2 replies
  • Sunday April 13, 2014 the Dallas Support Group will be having a Combination Meeting. We have a speaker coming, a Physical Therapist will be talking about people with EDS using Exercise to help manage ...

Bilateral Flank Pain

kellygremlin
  • By kellygremlin · New reply yesterday at 12:42 am
  • Discussion in General discussion · 6 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 ...

Serious crunching in neck

joannaemery
  • By joannaemery · New reply April 17, 2014
  • Discussion in Hypermobile EDS (Type III) · 13 replies
  • I was recently diagnosed with EDS lll and I have Cervical Spondylosis with nerve pinching. The pain and loss of mobility is getting worse. The crunching is getting really bad. So far I've had multiple ...

Tramadol, Prozac HOLY COW

Antje1863
  • By Antje1863 · New reply April 17, 2014
  • Discussion in Hypermobile EDS (Type III) · 10 replies
  • I guess this could be ' pain management', but it's pain management for EDS III. ( little side note- for some reason, reading through my son's notes from his rheumatologist, she mentioned considering Classic ...

Information for patients re: ACA Exchange Plans

Cotntail
  • By Cotntail · New reply April 17, 2014
  • Discussion in General discussion · 1 reply
  • Ya'll probably already know that I work for a large Ophthalmology practice in Austin, TX. Well, it's my business to know about healthcare insurance carriers. Yesterday I was at meeting at the Texas Medical ...

School, exams and revision.

emilyrose_
  • By emilyrose_ · New reply April 17, 2014
  • Discussion in Hypermobile EDS (Type III) · 7 replies
  • Hi, I'm 16 and I have my A Level exams coming up in less than a month. I'm really struggling to revise because I'm finding it hard to do much of it. I struggle to keep up with school anyway so not revising ...

Denied for a tattoo?

instrumental12
  • By instrumental12 · New reply April 17, 2014
  • Discussion in Classical EDS (Types I and II) · 12 replies
  • So I finally had the nerve to go get my first tattoo, ( just to see if tattoos work for me), yet in explaining my skin condition and the recommendations that people have said on here, they look at me ...

Squeaky baby?

Milly460
  • By Milly460 · Posted April 17, 2014
  • Discussion in Hypermobile EDS (Type III) · 0 replies
  • Just wondering if anyone has had experience with a new born who is unable to make sound. I was born without a voice and only started making squeaky noises at about six months of age. Doctors at the time ...

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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.