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Feet are a mess, help with orthopedic shoes that fit

Ravenhuffer
  • By Ravenhuffer · New reply 3:38 am
  • Discussion in General discussion · 3 replies
  • My feet are severely probated especially my left side. Everything is worse on the left side thank you curved spine. I'm as crooked as a politician, well almost, lol. At any rate like any female with an ...

A Little Warm Christmas Cheer For Everyone

cherishangel
  • By cherishangel · New reply 3:30 am
  • Discussion in General discussion · 12 replies · Photos
  • A painting I made for my little Zebra. Dear Santa, All I want For Christmas is a cure for EDS. Wishing All the EDS Zebras a happy Holiday Season ...

What I learned at the Mayo Clinic

Nina_Storm
  • By Nina_Storm · New reply 12:36 am
  • Journal · 32 replies
  • Well about a month ago my mother sister and I took a journey down to the Mayo Clinic in Minnesota, we stayed there from saturday night till about friday with plenty of tests and consultations to which ...

Recommendations for CCI, POTS, and Fatigue

mlm90
  • By mlm90 · New reply yesterday at 10:19 pm
  • Discussion in General discussion · 1 reply
  • I was told I likely have EDS and POTS. My biggest troubles are headaches from craniocervical instability (my C2 is constantly slipping "out to the left" and my C1 forward this has shown on X-rays and ...

Wrist Dislocation

Nicolemariee13
  • By Nicolemariee13 · New reply yesterday at 8:50 pm
  • Discussion in Newly diagnosed · 12 replies
  • My right wrist keeps dislocating. It usually goes back in right as it comes out, but a couple of times it stays out and I have to push it in or wiggle my wrist. It isn't painful really, only when I push ...

Tucson Meetup group

loosiegoosie
  • By loosiegoosie · New reply yesterday at 7:26 pm
  • Discussion in General discussion · 2 replies
  • Can't tell if I posted this before. Anyway, there is a newly formed Tucson Meetup group. http://www.meetup.com/Tucson-Ehlers-Danl os-Syndrome-Meetup/. Fifteen members and growing ...

Ehlers Damlos without skin elasticity

Kuhlgamma
  • By Kuhlgamma · New reply yesterday at 6:19 pm
  • Discussion in Hypermobile EDS (Type III) · 14 replies
  • I have been diagosed by my rheumatologist as having Ehlers Danlos hypermobility. Many of my specialists, when I shared with with them voiced their agreement basedon symptoms I have. My hip surgeon. My ...

Slap tear, capsular shift, biceps tendonesis

Kezia-Zebra-Vernon
  • By Kezia-Zebra-Vernon · New reply yesterday at 2:47 pm
  • Discussion in Bones, joints and muscles · 3 replies
  • Hi everybody. Newly diagnosed after a long self diagnosis period and am headed into my first Of many more surgeries. Worried about anyone else's outcomes and worried to pull the trigger I am very depressed ...

Maryland EDS Support Group ~ Winter 2015 meeting

SlapASmileOn
  • By SlapASmileOn · New reply yesterday at 6:09 am
  • Discussion in General discussion · 10 replies
  • Hello all Maryland EDSers (and those who hail from other cities and states and come to our meetings)! Our 2015 Winter meeting will be: WHEN: Sunday, January 25th from 1:00pm to 4:00pm WHERE: Miller Branch ...

fentanyl Swelling

lizzy79
  • By lizzy79 · New reply yesterday at 5:09 am
  • Discussion in Pain management · 1 reply
  • Hi all, has anyone who has been on the fentanyl patch experienced swelling in the hands and feel along with tingling in the extremities? I was put on the patch a month ago and my feet are like canons ...

Doctors in Sonoma County, Marin, Napa etc.

solevad
  • By solevad · New reply yesterday at 1:32 am
  • Discussion in General discussion · 8 replies
  • My wife has several types of ES (hypermobile, classic, cardiac valvular, familial aortic aneurysms) and we need to find a general practitioner in the Northern Bay Area. We live in Santa Rosa, CA and just ...

Symvisc in the hip for hEDS?

MelindaDC
  • By MelindaDC · New reply yesterday at 12:08 am
  • Discussion in Hypermobile EDS (Type III) · 2 replies
  • I have had one shot of this in my head that has helped stability and my subluxation. I'm wondering if anyone else is had this procedure ...

Free Webinar by Dr. Peter Byers - Wednesday, December 17!

EDS_Cleveland
  • By EDS_Cleveland · New reply December 18, 2014
  • Discussion in General discussion · 5 replies
  • Check out this free educational online session hosted by the EDS Awareness website. Dr. Peter Byers - our #1 Vascular-EDS expert will be speaking this week! Remember that any EDS type may experience vascular ...

Rush University

erinbabyrn
  • By erinbabyrn · New reply December 18, 2014
  • Discussion in General discussion · 2 replies
  • I am reading about other's experiences at different centers and wondering if anyone has been to Rush? I choose the Connective Tissue Disease Clinic there cause it seemed like less an ordeal than Mayo ...

Anyone in Savannah Georgia with EDS? Any health groups for this area?

MelindaDC
  • By MelindaDC · Posted December 18, 2014
  • Discussion in Hypermobile EDS (Type III) · 0 replies
  • Hi, I asked about Indianapolis and now I'm asking about Savannah Georgia. I will be in this area and would like to connect with those people as well. If anyone knows anyone in Savannah Georgia I would ...

Doctors in Phoenix or Tucson to Dx EDS

sopranico
  • By sopranico · New reply December 18, 2014
  • Discussion in Hypermobile EDS (Type III) · 7 replies
  • Hello! I have a co morbidity of EDS and the more I started reading, the more I am 99% sure I have hypermobility EDS. I have been diagnosed with hypermobility. I have had vasovagal syncope throughout my ...

Hospital to treat Joint Hypermobility Syndrome (Ehlers–Danlos syndrome (E

DmNec
  • By DmNec · New reply December 18, 2014
  • Discussion in Hypermobile EDS (Type III) · 2 replies
  • Hello, would anybody please refer me the best hospital to treat Hypermobility Syndrome (Ehlers–Danlos syndrome (ED) in Canada for my 8 year old daughter? Your valuable suggestion / advice will me highly ...

Feeling discouraged

Maddie28
  • By Maddie28 · Posted December 18, 2014
  • Discussion in Neurologic issues · 0 replies
  • Have an appt with Neuro Surgeon next month to discuss my arachnoid cyst, since Sept of this year when diagnosed, my symptoms have expanded. I have done some research, however it seems that this appt maybe ...

colonoscopy with VEDS?

janetwit
  • By janetwit · New reply December 18, 2014
  • Discussion in Gastrointestinal issues · 7 replies
  • I'm needing some advice and info. on planning a colonoscopy. Although I have no symptoms currently, it is has been 10 years since my last colonoscopy, so it's the standard of preventative care to have ...

Purple Upper Body??!

cassyg95
  • By cassyg95 · New reply December 18, 2014
  • Discussion in General discussion · 3 replies
  • Hello, I'm new here and getting frustrated with google's lack of answers. So maybe you can tell me? when I take a shower warm (not HOT) my upper body seems to turn purple, like ive been bruised.. it goes ...

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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.