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Anyone else with Churg-Strauss or EPGA?

Autoimmune Diseases | Last Active: 2 hours ago | Replies (41)

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@becsbuddy

@roxy1954 Hello. In additions to @johnbishop great ideas, you might also look into American Autoimmune Related Diseases Association, AARDA. They have lots of good information. I, too, have an unheard of autoimmune disease, Clippers. There are very few of us around. But we do have a Facebook page for sharing information. You might also check to see if there is a page for Churg-Strauss.
As I have found out, you have to become a researcher, a question-asker, and advocate! And try to establish a good, friendly relationship with your doctor. BTW, what kind of doctor are you seeing?

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Replies to "@roxy1954 Hello. In additions to @johnbishop great ideas, you might also look into American Autoimmune Related..."

Becky, thanks for the note. I see a general PA, a cardiologist, pulmonologist, a urologist, an endocrinologist, a rheumatologist who only deals with arthritis, a geneticist, an ophthalmologist, a kidney man, a hematologist, an oncologist and a few more that I cannot remember their titles right now. And whoever is on at the ER. and the guy who does colonoscopies. And the dentist. And the anesthesiologist. And the dermatologist. And, oh, yes, a shaman and a witch doctor and a faith healer and the tooth fairy. And one more. "Sassy" for my frequent cat scan.😉

Hi Becky. Thanks for the information. I will check it out. I looked up Clippers because I had never heard of it and I didn't remember seeing it on the list of Auto-immune diseases. It sounds crazy and the facebook support group is a wonderful avenue for you to be able to connect with others that understand. It is hard when your friends and family don't quite understand what is going on. But, it is also hard to explain when you don't have answers yourself. I look fine so I must be fine. I will look into it. I have a team which started with my allergist who then sent me to a pulmonologist, rheumatologist, hematologist, gastroenterologist and cardiologist. I am basically seeing the pulmonologist and rheumatologist most frequently. The others are now for maintenance as this disease can progress to other organs. The Nucala has kept my EOS numbers in check so that is good. I seem to have developed Diabetes, possibly from some of the medications but not sure what the next step is for that. Thank you for the information.