New treatments, better care, less time to treat

“Treating PI is harsh. It’s when I lost my hair I felt most depressed, going through the whole process of diagnosing, looking at the zebra, was a struggle but I always knew that I was going to get through it.

My biggest fear was what it did to me on the outside. I wanted to feel somewhat normal. I lost my confidence and I was seeking advice.

Patient peers that the pharmacy suggested helped me through this. I was able to look in the mirror and see someone beautiful.

We all went through it together.”

Ed: “Looking at the zebra” refers to the fact that primary autoimmune is a rare disorder. There is an expression in medicine, “When you hear hooves, look for horses.” This means that the most common conditions that match the symptoms should be considered first. There are those of us who must look for zebras, because we always seem to have the exotic diagnoses.

“By the time I was 20 [I had] already lost some of my best friend’s due to HIV or inhibitor complications. Wheelchairs were a common narrative. We spent a lot of time together in the hospital.

Now we are seeing people climb Mount Everest. I thought, “it’s not for me.” I signed up with the pharmacy and turned out that I needed to change my infusion schedule.

They set me up with an adherence specialist. In a couple of months, I was off pain meds. Managed to work more, earn more, spent less time in being in pain or just feeling down because I can’t do something. We need some special kind of support, and specialty pharmacy are well equipped to provide it.”