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Stem cells for Autoimmune Diseases
Autoimmune Diseases | Last Active: Jul 25, 2022 | Replies (25)Comment receiving replies
Molly,
Thanks for your reply and the links for more information. My daughter lives in Arkansas, and was diagnosed 5 years ago with Membranous Nephropathy, catastrophic anti phosphoid lipid syndrome and the CNS Vasculitis. All occurring simultaneously in a never sick 15 year old. We did contact the Vasculitis foundation this past summer and got assistance with a neurology appointment in Tennessee quicker than we could in Arkansas. It seems that there is so little known about this type of Vasculitis we aren’t able to find resolutions to help with the daily headaches, CRPS. We have done IV Cytoxan, oral imuran, acupuncture, chiropractic, RFA nerve blocks, and yet she still struggles daily to have a somewhat normal life.
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I cannot imagine dealing with all this as a 15 yo or the parents of a 15 yo. Is your daughter now a patient in one of Tennessee’s medical schools? I’m a patient at the U of Michigan medical school which provides my doctors with endless contacts and problem solvers all over the state and country eventually. My sister, who has a rare AI that struck her brain, was able to get into the university system in her state. Getting into one opens doors to resources at all the others. Have you been able to find support for yourself as a caregiver?