Tierney's Story

By Tierney, Pityriasis rubra pilaris, United States, February 28, 2018

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.

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