Active journals

EDS northern Ireland

  • By del74 · New reply February 15, 2014
  • 1 reply
  • Hi I have 2 young sons with EDS. We live in Northern Ireland. Both boys have multiple allergies and we attend London with gut issues and allergies. We have been advised to go for genetic testing in London ...


  • By lori326 · Posted February 15, 2014
  • 0 replies
  • There will not be a meeting in Lancaster(SUBURBAN OUTPATIENT PAVILION)due to the bad weather today. We can keep in touch at our facebook page till the next meeting -April. POTS/EHELRS DANLOS SYNDROME ...

Is this EDS

  • By sray2229 · New reply February 14, 2014
  • 3 replies
  • These pictures where taken before I knew much about EDS. This is my youngest child, she has a lot of the same symptoms as I do. We have stretchy skin, joints pop a lot, and pain. Her pain isn't every ...

need information

  • By cookiehay · New reply February 14, 2014
  • 6 replies
  • I am a 43 old woman who was diagnosed with eds at the age of 30 and resently I was diagnosed with menopause. Now my doctor is considering putting me on estrogen supplement to prevent the development of ...


  • By kissfork · New reply February 13, 2014
  • 1 reply
  • Went to my 1st pain clinic apt yesterday after going for my 1st echocardiogram. Echo procedure was everything but comfortable. Thought my ribs were going to come unattached. Ouchy! Results were normal ...

EDS? are you sure its not mold??

  • By jessiejane741 · New reply February 13, 2014
  • 47 replies
  • My aunt calls me up and says that I probably have mold. And that ehlers danlos syndrome and mold symptoms are very similar. This just sent me over the edge. I said mold doesn't dislocate your shoulder ...

Introducing Photos for Inspire

  • By Walter · New reply February 13, 2014
  • 180 replies
  • Hello everyone, Today at Inspire we’re excited to announce the launch of a new feature, and it’s one that many of you have requested -- the ability to upload photos to Inspire. You can now add photos ...

Insomnia keeps this Zebra thinking...

  • By Zeraphic-Ziggy · New reply February 13, 2014
  • 1 reply
  • Hello Everyone, May this entry find you all as well as possible or at least cuddling a toy zebra rather than a zebra clamering on top of you. It's now 03:45 hr's here in my area of the geographic world ...

bobble head

  • By kissfork · New reply February 12, 2014
  • 3 replies
  • so while in the shower yesterday, I leaned my head back to wash my hair and the scariest thing happened. My neck popped at the point where my head attaches to my spine and my head felt like it was falling ...

Bittersweet, a dianosis after 36 years.

  • By joannaemery · New reply February 12, 2014
  • 6 replies
  • After 36 years of pain, fatigue, many physical problems, many diagnosis, I have an answer. I was diagnosed with Ehlers-Danlos syndrome hyper mobility type. Today I suffer with a type of mourning that ...

Psychologist search - Nashville, TN area

  • By Momcooker · New reply February 11, 2014
  • 7 replies
  • Recently diagnosed with EDS type 3 and am having some troubles coping with this and quite a few other things going on in my life right now. I need help finding a psychologist with EDS knowledge in the ...


  • By Dotz · New reply February 11, 2014
  • 1 reply
  • Iv been living with EDS for years since i was born i suppose but only last year a doctore from Europe confirmed that indeed I EDS although iv known for years through personal research .. I went through ...

I Hate My Body!

  • By AJP_01 · New reply February 10, 2014
  • 4 replies
  • Saw my PCP today and walked out with several referrals. It's tax season, I don't have time for doctors! 1. blood test 2. Rheumatologist 3. Bone Density Test 4. Orthopedist for hip 5. Sleep disorder clinic ...

surgery with EDS

  • By maryan_bby · New reply February 9, 2014
  • 3 replies
  • I've had 3 shoulder surgeries, I am currently healing from my 3rd right now. my first two worked for about a year before I had to go back in for the next surgery. Well this surgery the doctor said it ...


  • By kissfork · New reply February 8, 2014
  • 1 reply
  • Worked extra long day today. Nothing good for me to post. Besides all my usual joint headache today has been too much. I have had one of the worst days with my neck pain. Wishing my pain appointment ...

Anyone from southwest florida?

  • By MomofLexi · New reply February 8, 2014
  • 3 replies
  • Just wondering if anyone else here is from Florida or southwest Fl ...


  • By kissfork · New reply February 8, 2014
  • 11 replies
  • It seems the pain gets worse every single blooming day! My 1st pain clinic appointment can't get here soon enough. Nothing over the counter seems to ease me up at all. Does anyone have any other suggestions ...


  • By Turtle33333 · New reply February 8, 2014
  • 1 reply
  • My joints already get very sore but in winter they hurt so bad I am going to find a heat pack soon but it's so cold i can't wait to grow up and move out of Indiana the worst parts of my body are lower ...

Struggle with feeding

  • By Ellesbelles · New reply February 6, 2014
  • 17 replies
  • I'm sorry I haven't been around for a while. In October and November I had an 8 week stay. The goal of the stay was to put on enough weight and have tests done so I was ready for my Gastrostomy. It proved ...


  • By kdg1213 · New reply February 6, 2014
  • 31 replies
  • So we have decided to go ahead with the surgery. I think it is the right decision, but it is still scary. Tomorrow the doctor will call me to schedule it. This surgery has a little bit higher stakes because ...

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