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Chronic Erythema Nodosum & Ehlers-Danlos Syndrome (EDS)
Autoimmune Diseases | Last Active: Apr 25 5:19am | Replies (105)Comment receiving replies
It looks like this discussion is old but I am trying to find information for my daughter who suffers from EDS and POTS. She lives in Spokane WA and is struggling to find anyone to listen to her there...they now are sending her to a rheumatologist but she can't be seen for 8 months. Wondering if anyone can offer suggestions for how she deals with her symptoms of feeling weak and having pain everywhere....its so upsetting to not find a doctor who specializes in this disease and sees it as a real thing. Thanks for any information offered...
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@kmg218 Maybe I can offer some help. Has your daughter gone to a comprehensive medical center or a university hospital. These are usually a cut above community hospitals because the doctors like to do research and try new medications or treatments. You can just call and see if the doctors treat ED and POTS.
Another”thing” to try are these two organizations who try to help those with ADs. They are:
GARD. https://rarediseases.info.nih.gov/
NORD. https://rarediseases.org/
Both of these sites are well worth your time and they have lists of doctors for you. You can also go to the Autoimmune Association website and look for list of doctors. Good luck in the hunt—I’m sure you will be successful!