By the time Catherine came to me for help, in the spring of 2012, the health care system had pretty much destroyed her health.
“I’ve been diagnosed with this… condition,” she began. “It’s called Churg-Strauss. They want to do surgery in a few weeks to confirm that I have it.”
Normally, this 53-year-old management professional lights up a room with her grace and vitality. Today was different: Three different doctors had just told her that she likely had a rare and fatal autoimmune condition.
Churg-Strauss Syndrome typically develops in three stages, starting with severe asthma and allergies. Next, the immune system fails, manifesting as fatigue, coughs, abdominal pain, gastrointestinal bleeding. In the third phase, the arteries and veins become so inflamed that blood can’t get to vital organs, causing all sorts of nasty symptoms: nausea, vomiting, chest pain, shortness of breath, numbness in the toes and fingers so bad that you can’t walk. All your major organs, muscles, and joints are attacked. Researchers aren’t sure what causes Churg-Strauss and there is no cure, but treatment—corticosteroids to start and, if it progresses, chemotherapy—can help keep the final stage at bay.
Sitting across from me that day, Catherine seemed confused and exhausted, uncertain of what to do, and fighting back tears every time she said the words “Churg-Strauss.” The process of trying to get better had only made her feel worse.
It was clear that she required more than just medical advice; she needed to regain the courage to take charge of her own medical care. Her history would provide the important clues we needed to get her back on track. “Tell me everything,” I said. “Start from the beginning.”