The story of Tierney
I have a rare disease called pityriasis rubra pilaris (PRP). It affects one in 400,000 if you have the “common” form of it, which is adult onset. I have juvenile onset which affects one in two million. It makes severe psoriasis look like a walk in the park, or as my husband says “like psoriasis on steroids.” I’ve had skin problems since I was 11 years old, I am now 58. It comes and goes for me, mostly comes, and I’ve lost my hair, been socially isolated, hospitalized, lathered up from head to toe in creams/lotions/ointments, etc…. It’s a horrible disease.
*Find others with pityriasis rubra pilaris (PRP) on RareConnect, the online platform for people affected by rare diseases.