7-PRP Advocacy

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 […]

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

  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

  What is the Rare Skin Disease Referral Initiative? Pityriasis rubra pilaris is one of 574 rare skin diseases. In fact, with a prevalence of only one in 400,000, there are only an estimated 808 patients under treatment in the U.S. When a patient is diagnosed with pityriasis rubra pilaris (PRP), the dermatologist — with very rare

  Editor’s Note The following message was submitted as a comment to the American Airlines regarding the recently incident that resulted is a mother and her son, both diagnosed with a rare skin disorder (ichthyosis) and removed from a flight. SEE USA TODAY REFUSAL TO TRANSPORT According to the International General Rules (AA1) posted on

    PATIENT DEMOGRAPHICS PRP Patient Profiles: 103 PRP Facebook Support Group: 72 Non-aligned: 31 Number of PRP patient profiles by state: Australia Capital Territory): 2 New South Wales): 27 Queensland: 24 South Australia: 2 Tasmania: 1 Victoria: 26 Western Australia): 8 Note Yet Shared: 13

From the Editor — The following sources were used in the preparation of Jan Tennant’s article PRP, Eyes and Impaired Vision. MedlinePlus, U.S. National Library of Medicine https://medlineplus.gov/ency/article/001017.htm National Institutes of Health https://nei.nih.gov/health/cornealdisease/ https://nei.nih.gov/health/dryeye/dryeye https://nei.nih.gov/health/blepharitis https://nei.nih.gov/kids/glossary https://nei.nih.gov/kids/about_the_eye https://nei.nih.gov/kids/your_eyes_natural_defenses AllAboutVision.com https://www.allaboutvision.com/conditions/eye-discharge.htm https://www.allaboutvision.com/eye-exam/expect.htm

Issues related to eyes and impaired vision Editor’s Note:  A special thanks to Jan Tennant, Ringwood, New Jersey for her efforts to provide a PRP-oriented tutorial on eyes and impaired vision. In so doing she set a standard for similar tutorials in other areas, e.g., feet and impaired mobility, hands and impaired dexterity, etc. by