Editor’s Note: I always get nervous when a member posts a link to a third-party website. On March 20, Pam A (Tavistock, Devon, England, UK) shared a link to an article written by Helena Önneby. A First Aid Kit When Life Falls Apart. “What if pain—like love—is just a place brave people visit?” ~Glennon Doyle It’s one […]
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What do you take for the pain and itch of PRP? If you are a member of the PRP Facebook Support Group, CLICK HERE to access the original, unedited post (March 19, 2019) and add your two cents. Roy T — Rehoboth Beach, DE I take gabapentin. 4 or 5 100mg pills a day as
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From the Editor The PRP Survival Guide is designed to be a repository of experiences and insights shared by PRP patients and their caregivers. Collectively, the PRP community possesses a wealth of practical knowledge about pityriasis rubra pilaris. Only we are best positioned to harvest that knowledge. Share what you have learned about flares and setbacks. Share articles you feel might
What are tips to reduce swelling of feet and legs? Stewart L (Portsmouth, Hampshire, England) I used tight socks like ones you buy for hiking as they gave me best support and could pack cream under them Mary H (Novato, California, USA) Elevate your legs and rest. You have to get off your feet or
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From the Editor The PRP Survival Guide is designed to be a repository of experiences and insights shared by PRP patients and their caregivers. Collectively, the PRP community possesses a wealth of practical knowledge about pityriasis rubra pilaris. Only we can harvest that knowledge. Sometimes we find resources worthy of bookmarking. NAME GOES HERE falls into that category. Finding answers in
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From the Editor The late Tierney Ratti (1961-2020) was a PRP veteran who became the Gold Standard of caring and sharing. Her journey began in 1972 at the age of 11 with the onset of pityriasis rubra pilaris. She was one of the original “Pretty Red People” who traded emails on AOL — You’ve Got Mail. Inspired by
PRP Facebook Support Group Read More »
From the Editor The PRP Survival Guide is designed to be a repository of experiences and insights shared by PRP patients and their caregivers. Collectively, the PRP community possesses a wealth of practical knowledge about pityriasis rubra pilaris. Only we can harvest that knowledge. Sometimes we find resources worthy of bookmarking. The National Organization of Rare Disorders falls into that
National Organization of Rare Disorders (NORD) Read More »
From the Editor The PRP Survival Guide is designed to be a repository of experiences and insights shared by PRP patients and their caregivers. Collectively, the PRP community possesses a wealth of practical knowledge about pityriasis rubra pilaris. Only we can harvest that knowledge. Sometimes we find resources worthy of bookmarking. The Generic and Rare Diseases Information Center falls into that
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From the Editor The following was posted on March 25, 2017 and introduced a new “glove” product. The unedited post/comments are available to PRP Facebook Support Group Members at: https://www.facebook.com/groups/15865278115/permalink/10155052461758116/?match=bml0cmlsZQ%3D%3D Abbas V — London, England, UK I’m trying out VITRILE glove. It’s a hybrid Nitrile with vinyl. So far my preferred glove as it combines the firmness of vinyl
PRP and Vitrile Gloves Read More »
From the Editor The PRP Survival Guide is designed to be a repository of experiences and insights shared by PRP patients and their caregivers. Collectively, the PRP community possesses a wealth of practical knowledge about pityriasis rubra pilaris. Only we can harvest that knowledge. Tell us your story. Share what you have learned as a patient diagnosed with PRP. from onset,
PRP Journeys — The Road Less Traveled Read More »