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Ehlers-Danlos Syndromes

Ehlers-Danlos support group and discussion community

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Ehlers-Danlos Syndromes

Beyond the ACA: A Physicians’ Proposal for Single-Payer Health Care Refor

simplee's journal

simplee

beyond-the-aca-a-physicians-proposal-for-single-payer-health-care-reform

200212

* NOTE: PLEASE CLICK ON "OLDEST FIRST" TO VIEW THE POST OF EACH SECTION OF THE ABSTRACT, IN THE ORDER IN WHICH THEY APPEAR IN THE ABSTRACT. As the new Administration and Congress will once again be debating reform of our health care, it is very important that we look closely at an option that covers all of us, will give us the most coverage for the least cost, and the most freedom ... Read More

Ehlers-Danlos Syndromes

EDS Neurosurgery in Ontario, Canada

In: Neurologic issues

LorrieL

eds-neurosurgery-in-ontario-canada

200212

This is an odd story, but since it has to do with EDS patients getting much needed neurosurgery, I wanted to share it. I first came across this article, titled: "Patients Face Surgery Delay after Neurosurgeon Charged with Killing his Wife" http://www.ctvnews.ca/canada/patients-fa ce-surgery-delays-after-neurosurgeon-cha rged-with-killing-wife-1.3191286 "CTVNews.ca Staff Published Tuesday ... Read More

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Ehlers-Danlos Syndromes

21, recently diagnosed with EDS type 3. advice strongly needed.

In: Hypermobile EDS (Type III)

Micaeds

21-recently-diagnosed-with-eds-type-3-advice-strongly-needed

200212

Hi there, I'm a 21 female who prior to this year was a normal, fun loving and active 20 year old. EDS has hit me like a train. I don't know what to do with myself anymore. The pain is so bad I left work and uni ( I was doing a acting and dance course) . Now my life consists of sleeping till 2pm, getting up, taking my pills and sitting zombie like on the sofa. Is there a light at the ... Read More

Ehlers-Danlos Syndromes

Feeding Tube Stoma Leakage & Treating Damaged Skin Options

Duvie's journal

Duvie

feeding-tube-stoma-leakage-and-treating-damaged-skin-options

200212

Hello Everyone, I read that approximately 900 new members join Inspire daily. Although I've posted many times before I think it's past time for me to bring this subject up again. Mainly for all the new members who are unaware of past posts and their comments from all the valuable members who commented before. Since there are over 200 medical reasons for a patient to have a feeding ... Read More

Ehlers-Danlos Syndromes

How do you make medical decisions?

Brian's journal

Brian

how-do-you-make-medical-decisions

200212

Dear members, As patients and caregivers, we have more sources of medical information available to us than ever before to help us make the best decisions possible for our health. Advice from our doctors is sometimes not the same as the information we learn from the experiences of our peers, and there are often other sources of information available as well. Some of our decisions feel ... Read More

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Ehlers-Danlos Syndromes

Tremors: EDS Anxiety or Something Else?

In: Newly diagnosed

BeardenWrestlingMom

tremors-eds-anxiety-or-something-else

200212

My mother, sister, and I all have had tremors since we were kids. Our mother passed away from lung cancer in '09 without getting an EDS diagnosis, but was definitely hyper mobile, my sister, and I have recently been diagnosed. My geneticist says the tremors are unrelated to the Type III that we have. I was diagnosed with MS in '08, and EDS a couple of months ago. I write my tremors ... Read More

Ehlers-Danlos Syndromes

Cognitive Problems from Neck Hypermobility?

In: Neurologic issues

velouria1987

hypermobile-neck-and-spinal-cord-injury

200212

Has anyone with hypermobility in their neck ever passively (as in with no identifiable trauma) injured their spinal cord or triggered speech problems? I've been experiencing more frequent problems in my neck and dislocations in my left shoulder, and last night after a particularly embarrassing moment realized I've also been mixing up my words A LOT lately (where you are thinking one ... Read More

Ehlers-Danlos Syndromes

Ehlers danlos and kidney stones

In: Vascular EDS (Type IV)

Nancy1222

ehlers-danlos-and-kidney-stones

200212

Can anyone tell me if they have had issues with Kidneys. I have VEDS and have been passing blood clots and blood for over a week. I also have mast cell issues. Bladder was fine in scope and he wants to do another scan in a week. I am allergic to dyes so I cannot have during scan. Can we rupture? I barely have any pain and have been getting sicker since thanksgiving ... Read More

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