A Hot Day in Arizona

The story of Constance

A Hot Day in Arizona

It was April 2005. I had just moved 1400 miles away from all my family and friends, and I was sick. An urgent care physician sent me on my way with a stomach flu diagnosis and an antibiotic script. A week later I was in a hospital emergency room because I had tiny red dots all over my wrists, ankles, and feet.

A serious, young doctor asked me how long I had anemia. “Pretty much all my life,” was my reply.

“Has anyone ever talked with you about your platelets?” he asked.

“No. What’s wrong with my platelets?” I asked.

“Your platelet count is 4. It should be 100 or higher.”

I knew then that I was in trouble. Platelets clot blood. That low count meant I had no way to clot.

A week later, I was discharged from the hospital, diagnosed with Evans Syndrome. My immune system was gobbling up my red blood cells and platelets like they were candy. It was early in the Internet, and I could find only very limited information. One of the few available documents said 30 percent of the people who get Evans Syndrome, die from it.

Finding out I have Evans Syndrome was life-changing. I grew to appreciate not just each day, but every breath and every beat of my heart. Each moment is a lifetime.

A year and a half later, I was in remission. It was a magical IV drug, used to treat lymphoma and leukemia, that actually got me to remission: rituximab. Rituximab is a monoclonal antibody that surprisingly comes from the ovaries of Chinese hamsters. Who’d have thought?

That was 16 and a half years ago. Since then, I have also had problems with too much clotting (really!), as well as Lupus. You see, Evans Syndrome, like so many autoimmunities, rarely show up alone. I have Lupus. I have Sjögrens. I have Hashimoto’s. I have eczema. Autoimmunities, all.

My husband and I were moved to start up a group where people who have Evans Syndrome, or the people that love them, can find information and support. We named it the Evans Syndrome Community Network, and close to 2,000 people worldwide are now part of that effort. We are all helping each other when feeling sad or scared or unsure, and we cheer victories, both large and small. We share our tears when one one of our number is lost.

We have cooperated with NORD and EURORDIS to beta test and promote their social media effort called RareConnect.

What we know? Each of us, together, can make a difference: Each of us, together. Together, we can make a huge difference in the lives of others.