August CSS Awareness Post

August by Libby

In Memory of “Kevin”, today I wish to raise awareness of an extremely rare life-threatening autoimmune disease called Churg-Strauss Syndrome (or EGPA, eosinophilic granulomatosis with polyangiitis). Many of us are posting today and on the 1st of every month asking our friends to share this on their pages to promote awareness of this illness.

I have CSS. I did not know it existed until I was diagnosed at stage 3 at age 58. There are three stages of this disease but the first stage is usually just thought to be general illnesses on their own. It is important to become educated about the stages in order to be able to put it together should you experience these. This is a very difficult syndrome to diagnose so it is of utmost importance that you are able to be your own best advocate should symptoms occur. Getting proper treatment with doctors who specialize in Rheumatology/Vasculitis could prevent severe organ damage. Many doctors are not experienced with this syndrome or vasculitis in general. There are only 2 to 5 new cases per year per million. Fortunately for me, I did get to Cleveland Clinic and got the proper treatment; however, had I gotten there sooner, some of the damage may not have occurred. Please be aware of this syndrome as well as the many other forms of autoimmune disorders and vasculitis.

Thank you.

Libby

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