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Ehlers Danlos stories


NÃO SOU DESASTRADA, EU TENHO SÍNDROME DE EHLERS-DANLOS


Eu nasci com Síndrome de Ehlers-Danlos, afinal a Síndrome de Ehlers-Danlos é uma doença genética. Eu descobri que tinha Síndrome de Ehlers-Danlos aos 45 anos, por acaso. Vendo uma apresentaç...

Views: 4315 by Desiree Novaes Pimentel

A SUBCLINICAL LIFE


I suffered my entire life with issues and signs of Hypermobile type Ehlers-Danlos Syndrome, including extreme flexbility as a child that I "grew out of" in my young adulthood, slowlyl stiffening with age and early onset arthritis. Like too many, doct...

Views: 1221 Mar 20, 2016, 5:24 PM by Jan Groh

I RUN SUPPORT GROUPS FROM MY HOME


Lost all my friends all I know is chronic pain, 29 years has passed in a blink of an eye. I am lonely depressed and given up on by doctors who just label me and close the door. Stick me on meds and shut me up. I have degeneration in my spine 3 hernia...

Views: 1049 by Sarah

FRUSTRATED


I have always been sick all my life, not knowing why. When I started taking my BP more frequently, I realized alot of my symptoms were BP related, thus since been dx with dysautonomia, due to EDS. Before this time, I had pursued answers, with many cl...

Views: 875 May 13, 2016, 12:35 PM by Vicky

MY EDS LIFE


I'm 54 years old and have had to learn to "just live with it". Stretchy skin and bendy joints have the pain in my life. My skin has been so thin that what would be a bruse for a normal person was a laceration for me. My knees are a wreck. My body hur...

Views: 823 by Ken Nielson

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Ehlers Danlos forum


CAN TRAUMA MAKE EDS WORSE?


We were in a car accident several months ago. Before that, I was hypermobile, but not as badly as I am now. Could the trauma of the accident trigger more issues with my connective tissue overall? For example, even though my feet/legs were uninjured, ...

Views: 2295 Jan 16, 2016, 7:43 PM by Toni Rakestraw

DOES ACUPUNCTURE CAUSE MORE PAIN?


So in the past 2-3 months i have been doing acupunture but after wards im in so much pain to wear my doctor puts the needles, does this happen to you?

Views: 859 Jun 1, 2016, 4:52 PM by Crystal

IS THE PHYSICAL THERAPY EFFECTIVE?


The doctor has recommended exercise and physiotherapy to strengthen the muscles of my son and, then, protect his joints... anybody can advise in what kind of exercises or sport? I thin swimming may be the best option… Many thanks!

Views: 761 Jan 25, 2016, 11:09 AM by Miguel

ANYONE ELSE WITH VEDS?


Looking for other diagnosed VEDS.

Views: 531 Jun 23, 2016, 12:20 PM by andrewroose

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