.Who are THEY? THEY are dermatologists THEY are the dermatology departments at teaching hospitals THEY are pharmaceutical companies THEY are the Federal Drug Administration THEY are legislators and policymakers THEY are the World Health Organization THEY are clinical psychologists and psychiatrists Who are WE? WE are the PRP global community WE speak with a […]
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Protected: Shared Decision-Making in Dermatologic Care Read More »
. 1. It begins with a question: How does PRP impact weight? 2. Then comes a blank webpage in the PRP Survival Guide . 3. Next is the TRANSLATE botton. Every webpage offers over 100 languages courtesy of Google Translate. . 4. Then we find posts on the subject of weight with feedback from PRP Facebookers. In
WEIGHT — It begins it a question…. Read More »
It took five years to get here, but it was well worth the effort. In June 2015, I traveled to Vancouver, Canada to meet with the leaders of over 60 global dermatology patient organizations. We were there to discuss the creation of an international alliance. As a group we all lamented the same problem. On one
GRIDD — The PRP Invitation Read More »
The Mountain Written by Laura Ding-Edwards , 2019 and submitted by Richard L — Lansdale, Pennsylvania and Christopher C — Ottawa, Ontario. If the mountain seems too big todaythen climb a hill insteadif the morning brings you sadness it’s ok to stay in bed ❖❖❖ If the day ahead weighs heavyand your plans feel like a
Editor’s Note . A new member of the PRP Facebook Support Group posted a question. It was a spark that ignited a firestorm of response. First, the post, then the resulting chatter. Cynthia H — Tampa, Florida. Onset: October 2013 (59) “… I wonder how everyone deals with depression and sadness. Some days I feel so
PRP, Depression & Sadness Read More »
You can help make more PRP history The PRP global community made history earlier this year. The experiences of over 600 PRP patients have been harvested through a 12-question survey focused on the period from onset of PRP symptoms to the official diagnosis of pityriasis rubra pilaris. The survey looks back on your own
PRP Onset to Diagnosis Retrospective Survey Read More »
Editor’s Note — The Aplastic Anemia & MDS International Foundation developed Standing Up for Your Health: Self Advocacy for Patients with Rare Diseases.a self-advocacy brochure that is worthy of note. It is unlikely that rank and file PRP patients and caregivers will go cover-to-cover and digest every jot and tittle. With that in mind, the following represents the equivalent of CLIFF NOTES
Standing Up For Health — COPY? Read More »
“Walking ’round with blue gloves on my hands.” Karen G, Palo Alto, California. Onset: July 2018 at the age of 56. Posted the following rewrite of “Walking in a Winter Wonderland” to the PRP global community on December 19, 2019. Ho. Ho. Ho Ears are clogged, I’m not listening.Hands and feet, they are stiffening.
Walking ’round with blue gloves on my Hands Read More »
Questions and Answers about PRP Source: PRP (email) Support Group [1997-2016]Revised January 5, 2005 Editor’s Note: When I was diagnosed with PRP in November 2012, it didn’t take me long to find the email-based PRP Support Group. At the time it was the only game in town! In fact, it was a PRP factsheet written/compiled
Lorna’s Q&A Circa 2005 Read More »