I and many of my friends on FB, have suffered with this for many years. Mine got better after decompression surgery in 2005... for a while. Due to having Ehlers Danlos syndrome ( a disease of the connective tissue collagen) the excessive stretching of the membranes around the brain and spinal cord from chronically elevated intracranial pressure, those membranes are now all stretched out and lax, the EDS keeping them from regaining their natural tautness, also called non-compliant I now have intermittent elevated pressure and most often low CSF pressure due to the weakened membranes that stretch too much and leak. This illness not only is understood by too few, but is often dismissed, and E.R. staff often think youre making half or all of it up. Some think its migraines, as awful as those may be, these are far different, far more pervasive and far more persistent, and far more damaging. and with far less effective treatment. Its very real, we lose members of our community ALL the time, all ages. Please learn what you can, and read this womans story, and pray for all who endure chronic illness, perhaps specially those with conditions others dont understand, or believe are real. thank you.
Posted on: Fri, 27 Jun 2014 22:19:29 +0000
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