VF in the News

Lynn’s Story

My Churg Strauss (EGPA) Life

I never feel why me? I feel why not me?

CSS (Churg Strauss Syndrome/Vasculitis), now known as EGPA – Eosinophilic granulomatosis with polyangiitis – is an autoimmune disease which is incurable, progressive, and can be life-threatening. Fortunately, I was diagnosed relatively early, and I am under excellent management by a team of specialists. Luckily, I have not had a “flare” since my diagnosis in 2008.

After about two years of feeling generally sick and asthmatic with a hacking cough, I was full of rashes and blisters. The skin biopsies were not conclusive but they did show very high eosinophils. On my fourth in-house hospitalization in 2008, the team of specialists put their heads together and came up with the diagnosis of EGPA.

I could no longer hold down a steady job, mostly because of fatigue. I was granted state disability (after a long battle including hiring an attorney), but I am able to drive myself where ever I need to go, and I can do pretty much whatever I need to do. EGPA has weakened some of my muscles, but physical therapy has helped tremendously. I lift some weights at home, and I do everything in my power to keep this disease at bay. Fatigue is always a problem. I certainly have some limitations, but my life is a new “normal”. Most of the disease is beyond my power, but I feel empowered by exercising, eating properly, keeping active, taking my meds religiously, seeing my doctors regularly and trying to be optimistic by counting my blessings and all the things that are going right in my life. I never feel “why me?” I feel “why not me?” It turns out that I can speak (and fairly intelligently) all over the country on raising awareness for these diseases.

Medication-wise, I am on 5 mg of prednisone a day and 25 mg of methotrexate a week. The idea with EGPA is to see how low one can get the prednisone and still be healthy. So, compared to some of the stories I have read about eosinophilic diseases, I consider myself very lucky, symptomatically speaking.

To paraphrase Stevie Nicks, “Some days it’s a b–ch, some days it’s a breeze.” I try to concentrate on what I can do, not what I can’t do. I have occasional pity parties, but they don’t last long because I think about how much worse my life could be. Thinking those thoughts doesn’t make my EGPA any better, but it gives me perspective so I can look at the big picture and not obsess over every blood test and symptom. I try to play the hand I’ve been dealt. It’s not always easy, but doable. Teach everyone about your disease and how it affects your life. We need to raise awareness wherever we can.

Lynn’s story is featured on the American Partnership for Eosinophilic Disorders website. APFED is a non-profit advocacy organization for those living with eosinophilic disorders.