A first aid kit when your life falls apart 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. It was ak eeper. “What […]
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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
Land of Chat — PAIN & ITCH Feedback 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 are best positioned to harvest that knowledge. Share what you have learned about flares and setbacks. Share articles you feel might
Issues related to swollen feet and legs Editor’s Note (August 24, 2021) I just read a collection of insightful comments to a recent post to the PRP Facebook Support Group. In part the post read: “My father is suffering … severe lower extremities swelling from feet to upper thigh. He is wondering if anyone had
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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. The National Organization of Rare Disorders falls into that
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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. 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
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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. 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 »
 When was your last dermatology clinic visit? Can we assume that your dermatlogist followed the established protocol for a 15- to 20-minute visit. Here’s the $64,000 question: Who was your advocate in the exam room? Or, were you a self-advocate? Clinic visits provide four opportunities for patients to become self-advocates. ✱  Pre-Clinic PREPARATION
PRP Self-Advocacy — The Clinic Visit Read More »
There is no excerpt because this is a protected post.
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