I got a google Alert for "chronic lymphocytic inflammation with pontine perivascular enhancement responsive to steroids" that reported only 20 people with the CLIPPERS diagnosis in the US. This seems low to me. I have thought there was maybe 50. Still so small. I'm still tapering (30 mg/day) and boy is it tough. Sore and tired, still hard to talk and sleep even with sleeping aids.
"Donna has been diagnosed with CLIPPERS (Chronic Lymphocytic Inflammation with Pontine Perivascular Enhancement Responsive to Steroids). She is one of only 20 people in the U.S. diagnosed with this disease. She is the only one in Colorado and Wyoming."