Evans Syndrome – How Feeling Tired and Low Platelet Counts Led To Rare Autoimmune Disease Diagnosis

Story Hero: Constance
Location: West Des Moines, IA
RARE Condition: Evans Syndrome
Constance suffers from a rare autoimmune disease called Evans Syndrome
Constance suffers from a rare autoimmune disease called Evans Syndrome

My name is Constance, and on the eve of my 44th birthday, I found myself sitting in the Emergency Room at my local hospital, waiting for a chest x-ray and CBC. Earlier that day, I had visited my internist as I was feeling extremely tired.  She, in turn, recommended I go to the ER immediately  to have tests done because it was Friday, and she didn’t feel the test results could wait until Monday.

At the ER, my case was placed low on the list of priorities, as I seemed relatively “healthy”  to the people at the admitting station in ER.  I was walking, I didn’t feel sick (just tired), and I wasn’t bleeding from an open wound.

After a 4 hour wait, a very serious, young doctor came to speak with me. He told me that my platelet count was 4,000 (normal is 100,000 or higher), and my hemoglobin was 8 (normal is 11.5 or higher). Hearing this, I knew I was in deep trouble. After all, weren’t platelets needed by the body to clot blood? Did this mean I was in danger of bleeding to death? Yes. Why was my hemoglobin so low? Had I already started bleeding inside my body? He didn’t know. Further tests would need to be run to determine the cause of my problem.

I was new to town and 1,600 miles away from family and friends. Alone, I received the news from the doctor.  I didn’t have cancer. It wasn’t HIV. It wasn’t anything I expected. It had a rare autoimmune illness called Evans Syndrome – a condition where the body’s own immune system targets and destroys its own red blood cells and platelets.

And it was the beginning of a new chapter in my life.

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