CSS Awareness Post March 2016
Your Rainbow is Coming
CSS/EGPA Awareness Post – March 2016
Hi my name is Tracy and I have CSS/EGPA. These are words I never thought I would utter in my life time, but here we are.
My journey started back in December of 1995. I remember that day well, it was Christmas Eve and my life was forever changed. I had a perplexing medical history that confused even the best of doctors. I was diagnosed with severe asthma, the only problem was that it was not responding to any of the latest treatments. I was one of the lucky ones, my critical care doctor never gave up. He kept looking for answers, which came in the shape of a vasculitis convention at Stanford. According to the medical professionals, I was a text book case of Churg Strauss Vasculitis Syndrome. I had the positive ANCA, the rash on my ankles and lower legs, high eosinophils, numbness in my feet/legs, blood clots in the lungs and the list went on and on.
Being in the medical industry, I wanted to know everything I could about this rare disease. That was a big, no a huge mistake; everything I read told me I would be dead in 5 years. All the research was on women and men in the age bracket of 40-60 years old. I was a 21 year-old female with what I thought was my whole like ahead of me and that scared me to death.
My 20 year journey has involved numerous rounds of various types of treatments, some which were experimental. I have been through chemo therapy more times than I would like to admit. The latest rounds were pretty awful and gave me a great sense of relief that I do not have cancer! I have a tremendous amount of empathy for anyone who has to endure that. I have been on high doses of prednisone to the point every fiber and cell ache. Multiple hospital stays because of either blood clots in my lungs or complications from having a compromised immune system. But I am still here alive and kicking!
This has not been an easy life to live; having the support system of an amazing husband, family and doctors have helped me to get through those difficult times. While I have not let this disease define who I am, it has been tough. My life is not what I envisioned or imaged, I can’t do the things I want like run a marathon or hike a 14’er. Yes, there are struggles and days I can barely get out of bed but each day is a gift. And my gift as well as other “Churgies” is to help those in the medical community and around us to understand what is it like to be diagnosed with a rare autoimmune vasculitis disorder.
Every Month the Churg Strauss Syndrome (CSS) / Eosinophilic Granulomatosis with Polyangiitis (EGPA) publish a personal story about living with this life changing chronic ailment. This is done to bring awareness to our disease in an effort to let the world know we exist and we want to help others obtain earlier diagnoses. It is a documented fact that earlier diagnosis leads to better outcomes in CSS/EGPA.
This project was started by a very brave CSS patient named Glenys in memory of a CSS warrior we lost all too soon.
Kevin Selig was diagnosed in January 2014 with Churg Strauss Syndrome and fought a courageous battle against the disease. Kevin passed away on Saturday, June 21, 2014, at the Mayo Clinic Hospital in Jacksonville, Florida.
by karen in wonderland