Stories of Ehlers Danlos

STORY
Ehlers Danlos stories
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...
Ehlers Danlos stories
Hello! I have Arnold Chiari type 1 and Hydrocephalus(but the new dr. says I only need to have just the internal shunt as of right now),as well as POTS,Kyphosis,vertical nystagmas and a Vit. E and Vit. D deficiency. I was diagnosed in 2009 at age 34 w...
Ehlers Danlos stories
Life is full of choices. You can use your broken down car that barely putses along drive home. Or you can get out and try walking. Or you can try a bike. Well you can't do that with your body. So you drive or you don't.  But ultimately we ...
Ehlers Danlos stories
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...
Ehlers Danlos stories
Second belt of  viral encephalitis had at 9 months old and at 31 years old.

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Ehlers Danlos forum

QUESTION
Question 122
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, ...
Question 317
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?
Question 186
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!
Question 323
Looking for other diagnosed VEDS.

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Statistics of Ehlers Danlos

1077 people with Ehlers Danlos have taken the SF36 survey. Mean of Ehlers Danlos is 1043 points (29 %). Total score ranges from 0 to 3,600 being 0 the worst and 3,600 the best. Take the SF36 Survey

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Ehlers Danlos

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