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From Bill McCue, Editor In 2008, Jonah Grant-Scarfe, a PRP sufferer from Canada, recognized the value of Facebook as a tool with which to share PRP-related insights and experiences with fellow PRP patients. The PRP Facebook Support Group didn’t immediately catch on. In fact, it took five years to reach the 100-member milestone. Facebook provides access to basic analytics regarding […]

#66 — The Christmas from Hell Several years ago a member of the PRP Facebook Support Group posted that her PRP hubby would be spending his Christmas in a hospital. It made me think about Christmas 2012 — my first Christmas with PRP. ‘Twas the night before Christmas,  I remember it well.There was no sign of “Merry†as

by Karen Schilling Gould, Palo Alto, California Editor’s Note: Here are some new lyrics to Walking in a Winter Wonderland. Karen calls it “Walking ‘round with Blue Gloves on my Hands.†  Ears are clogged, I’m not listening Hands and feet, they are stiffening A real scary sight My face feels so tight Walking ‘round with blue

Whether you are the PRP patient, a caregiver/carer, or designated surrogate, thank you for taking the time to update the “core data” associated with your PRP patient profile. If you have any questions, please email me. bill.mccue@prpAlliance.org    

The NORD PRP Report The NORD PRP Report was revised in 2017 by PRP patients and reviewed by a team of healthcare professionals including a past president of the American Academy of Dermatologists, the Chair of the Dermatology Department at Thomas Jefferson University, and current Vice Chair of the Dermatology Department at Oregon Health and

by Steve Gray — Norfolk, England Oh you horrible rare PRP.Why did you choose us? You came from nowhereand hit us like a bus. You made us all so red,and shed so much skin. You made us feel itchy,but in time, you won’t win. You have affected our livesin such a bad way; You made