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EDNF 2014 Conference

SlapASmileOn
  • By SlapASmileOn · Posted March 22, 2014
  • In General discussion · 9 replies
  • Don't forget to register for the 2014 EDNF Conference in Houston, TX on July 10-12! Early bird registration is until May 6th! Scholarship applications are due by April 15th! http://ednf.org/conference ...

genetic results time frame?

cathyowe
  • By cathyowe · Posted March 22, 2014
  • In General discussion · 4 replies
  • My 16 yr. old daughter has an appt. w/a geneticist May 22nd. to find out if she does have EDS. Wondering the time frame for results to come back. I've heard it takes months ...

Now I'm Wondering

oynk
  • By oynk · Posted March 21, 2014
  • In Vascular EDS (Type IV) · 6 replies
  • Greetings, After several years of wrangling back and forth, I finally got my 9yo daughters doctor to take a few minutes to look up Hypermobility EDS (Type III). He realized she met all the criteria and ...

Avedro receives complete response letter for CXL NDA

Cotntail
  • By Cotntail · Posted March 21, 2014
  • In Eyes, ears, nose and throat · 0 replies
  • Quick blurb here that I've just read in an Ophthalmology trade newsletter. For my friends out there who suffer from keratoconus and/or corneal extasia, some progress in treatment is being (slowly) made ...

How to prevent damage/aging?

1984
  • By 1984 · Posted March 21, 2014
  • In Classical EDS (Types I and II) · 23 replies
  • Hi everyone, I'm about nineteen now and am already seeing early signs of aging (wrinkly knees, elbows, and ankles) and am really not looking forward to my future because of EDS. I know that it might seem ...

punch biopsy

hypermobilecat (Inactive)
  • By hypermobilecat (Inactive) · Posted March 20, 2014
  • In Dermatology / wound healing · 2 replies
  • have to go for a punch biopsy tomorrow at hospital. I am having it to check what type of skin cancer I have. The cancer is 8mm deep and biopsy will be 3mm,have to have sutures. I had stitches before,dissovable ...

I'm happy to be finally using these sites

GastroparesisandMe
  • By GastroparesisandMe · Posted March 19, 2014
  • In General discussion · 4 replies
  • I have Classic and Hyper. I am symptomatic of Vascular, however, the test came back negative. Very glad about that. I rupture vessels constantly, I have several joints that are weak and give me a bit ...

Winter Flare

wendysk44
  • By wendysk44 · Posted March 19, 2014
  • In Hypermobile EDS (Type III) · 4 replies
  • We have had the coldest winter here in over 120 years!! It has been the most painful for me as well!! I have been in a flare for over a month and it hasn't gotten any better. My doctor gave me stronger ...

Type 4 observations and info needed

RKMoore
  • By RKMoore · Posted March 19, 2014
  • In Vascular EDS (Type IV) · 2 replies
  • My wife has type 4. She is 47 years old. I was looking for others with this type strictly to see if others have the same odd things happening to them. Things that I have noticed thru the last 7 years ...

Burning muscle pain?

Cmoceri
  • By Cmoceri · Posted March 19, 2014
  • In Hypermobile EDS (Type III) · 15 replies
  • Any one get a burning pain sensation like your muscles are on fire from inside? I have gotten this a lot in my thighs since having so many knee and foot surgeries. Usually while I am laying down at night ...

New Diagnosis/ Support Groups Dallas

SamanthaD79
  • By SamanthaD79 · Posted March 19, 2014
  • In Vascular EDS (Type IV) · 2 replies
  • Hello everyone! My name is Samantha and I have only recently been diagnosed with vascular EDS. I was wondering if anyone knows of support groups in the Dallas area. Thanks ...

waterbed yes or no

Tkerley
  • By Tkerley · Posted March 19, 2014
  • In Hypermobile EDS (Type III) · 14 replies
  • Hi, my teenage daughter has EDS that she inherited from me. When i was young i had a ton of pain and problems feeling rested after sleeping all nigh. As a teen i got a waterbed and remember sleeping much ...

Thanks everyone!

steph1196
  • By steph1196 · Posted March 19, 2014
  • In General discussion · 4 replies
  • Hi everyone, I wanted to say thanks for the amount of responses for my survey. Im now at 90 responses which is amazing to me! My goal was 30 and I'm just so amazed at the amount of feedback iv gotten ...

Have a number of questions I need help with

petra777
  • By petra777 · Posted March 19, 2014
  • In General discussion · 2 replies
  • Any information provided would be greatly appreciated... 1. Does anyone have a "mild" case of EDS III or IV & can you tell me why its considered mild? 2. Does anyone have "mild" or little symptoms & have ...

Had my third shoulder surgery exactly a month ago

animal
  • By animal · Posted March 19, 2014
  • In Hypermobile EDS (Type III) · 3 replies
  • My original thread is here: https://www.inspire.com/groups/ehlers-da nlos-national-foundation/discussion/abou t-to-have-my-third-shoulder-surgery/ They finally found an osteochondrol humeral head bone ...

Snail venom may lead to potent new pain medication!

cypipes
  • By cypipes · Posted March 18, 2014
  • In Pain management · 5 replies
  • http://www.smartbrief.com/03/17/14/snail -venom-may-lead-potent-new-pain-medicati on#.Uyi-95K9KK3 So you don't have to click: Snail venom may lead to potent new pain medication 03/17/2014 | Sydney Morning ...

EDS Awareness Speaker Series — March 19, 2014 (TOMORROW)

ladybugsew
  • By ladybugsew · Posted March 18, 2014
  • In EDS awareness · 0 replies
  • WHAT: “EDS Doctor Speaker Series” – a webinar program hosted by EDSawareness.com WHEN: Wednesday, March 19, 2014 at 7:30 – 9:00 PM Eastern Time TOPIC: Sacroiliac Joint Dysfunction with People diagnosed ...

EDS doctor in Michigan??? HELP

Cmoceri
  • By Cmoceri · Posted March 18, 2014
  • In Hypermobile EDS (Type III) · 34 replies
  • After years of trying to get each "specialist" on the same page (without success-even within the same fricking office!) I am now in need of an EDS doctor in Michigan, preferably in Macomb County. Or ANY ...

Need a Dr. to Diagnose ED

methos
  • By methos · Posted March 18, 2014
  • In EDS awareness · 1 reply
  • I need a Doctor in western Massachusetts that can diagnose (not treat) ehlers danlos syndrome ...

Plantar fibromatosis

Leigh1981
  • By Leigh1981 · Posted March 17, 2014
  • In Hypermobile EDS (Type III) · 7 replies
  • Hello! I recently had my feet reconstructed since my arches collapsed due to EDS. My right foot went well, but when I started PT I noticed big hard painful lumps in my arch of my left foot. They are benign ...

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