Lorem ipsum dolor sit amet, consectetur adipiscing elit. Ut elit tellus, luctus nec ullamcorper mattis, pulvinar dapibus leo. Bill McCue (Plano, TX) Whack! Whack! Whack! by Bill McCuey Bill NcCue When I was in 4th grade (circa 1956), my mother, father, brother and I moved to a small, World War II vintage house in Bristol, […]
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Lorem ipsum dolor sit amet, consectetur adipiscing elit. Ut elit tellus, luctus nec ullamcorper mattis, pulvinar dapibus leo. Issues Related to PRP and PAIN The PRP Survival Guide is 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. We need to
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PRP Perspectives: Pain by Jan Tennant, Senior Editor, PRP Survival Guide Pain is scary. It can make it hard to focus on anything else. It makes movement and physical activity difficult. It can make sleep impossible. Unlike many other symptoms of PRP, pain is invisible to others. Unusual or intense pain is alarming for
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Lorem ipsum dolor sit amet, consectetur adipiscing elit. Ut elit tellus, luctus nec ullamcorper mattis, pulvinar dapibus leo. Abstract Background Pityriasis rubra pilaris (PRP) is a rare and often severe inflammatory skin disorder with major detriment to patients’ quality of life. While past studies have described in detail the morphologic and histopathologic presentations of PRP,
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THE QUESTION Carolyn D (Willis, Texas) authored the following post (dated January 20, 2023) to members of the PRP Support Group: “Is there any data on how many PRP patients there are now in the world? Just curious. When I tell people about PRP they sometimes ask how many there of us.” Member-only link to
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Biologicals — FDA First Approval Dates Editor’s Note — Lise D (Denmark) posted the following lament to the PRP Support Group: “I wish it were easier to find out which [biological medications] are older or newly developed.} The following is a list of biologicals prescribed to, or considered by, PRP patients. The list is alphabetized
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A Letter to Isabelle’s School Editor’s Note: On December 17, 2021, Nicole Campbell, mother of Isabelle, shared the following letter with the PRP Support Group. She wrote: “I have written our daughter’s school an informational letter on her PRP, we are just starting out as she was diagnosed just a few weeks ago so we
The following webpage provides an overview of what is important about each question presented on the BASIC webpage. These are the “takeaways” you should have you in your metaphorical toolbox when dealing with family, friends and even dermatologists. As your PRP journey continues, you will become a Subject Matter Expert (SME) when you want to
Editor’s Note: The following information about the role of patient advocates was “harvested” from the National Patient Safety Foundation, Boston, MA several years ago and reflect the needs of PRP patients worldwide. The Role of the Patient Advocate Illness is a stressful time for patients as well as for their families. The best-laid
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PRP Global Database — 2022 Update Editor’s Note: This webpage focuses on the PRP Global Database as of January 31, 2020. The PRP-related data we capture is important to every member of the PRP global community. Whether you are a patient, loving caregiver (spouse, partner, or parent), an extended family member, friend or a healthcare
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