October 2, 2024
AN URGENT MESSAGE TO
ALL MEMBERS OF THE
PRP FACEBOOK GROUP
- With no warning, Facebook removed our group. I immediately appealed.
- Within a few hours my appeal was summarily denied and our PRP Facebook Group vanished.
- Nearly 2,400 members lost access to important healthcare information.
- We have established a PRP Facebook Group v2. for PRP refuges. CLICK HERE
- Morning alarming, we have lost over a decade of insights and observations of over 4,000 PRP patients and their caregivers ± PRP Facebookers all.
There are other important tasks at hand. We’ll figure this out and move forward – the favorite direction of every PRPer.
Bill McCue
Current & Future Member Orientation
A MEMBER of the PRP Facebook Group can be one of the following:
- Patient diagnosed with PRP
- Caregiver/supporter of a patient diagnosed with PRP
- Patient of caregiver awaiting confirmation if a PRP diagnosis
- Dermatologist currently treating a PRP patient or conducting PRP research
Whether patient, caregiver or supporter, membership in the PRP Facebook Group requires some “up front sharing”:
- YOUR ROLE: Options include: patient, caregiver, other (family or friend), dermatologist (treatment or research)
- PATIENT LOCATION: Enter the country in which the patient lives. Residents of the USA and Australia include State; residents of Canada include Province.
- EMAIL: A valid email address is one of several ways we protect our members and create a safe environment in which to share. Your email address is the most efficient way to conduct research. Email addresses are NEVER shared with third parties — even PRP researchers.
As a member you will have full access to the PRP Facebook Group. We are a CLOSED group serving PRP sufferers and their caregivers. The sharing of role, location and email address is the price of admission for all members.
Based on the prevalence rate of one PRP patient in a population of 400,000, there are aren’t many of us.
- EU: 449.2 million, 1.123 PRP patients
- USA: 333.3 million, 833 PRP patients
- Australia: 26.0 million, 65 PRP patients
- United Kingdom: 68.0 million, 170 PRP patients
- Canada 39.1 million, 98 PRP patients
There are an indeterminate number of PRP patients who are either misdiagnosed with a more common skin condition (psoriasis or atopic dermatitis) that mimics PRP or simply misdiagnosed. PRPis an über-rare skin disorder.
HISTORY OF PRP PATIENTS SUPPORTING PATIENTS
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 Jean-Luc Deslauriers, a Canadian, the original PRP Support Group was formed in 2003. Using list-serve technology, members traded an average of 150 emails each month. Membership has ebbed and flowed for over a decade and suspended its website in 2016,
In 2008 another Canadian and PRP sufferer, Jonah Grant-Scarfe, recognized the value of Facebook as an alternative to trading emails. In September 2013, Jonah made a giant leap of faith and converted the PRP Facebook Group from PUBLIC to PRIVATE. We were now MEMBERS ONLY and comments were measured in the thousands.
Today over 1,800 seasoned “PRP Facebookers” understand the importance of a CLOSED (private) Facebook group. While membership continues to ebb and flow, there is far more flowing than ebbing. And comments are now measured in the tens of thousands.
RULES OF THE ROAD — WE ARE IN THIS TOGETHER
As a new member three are some common sense Rules of the Road to follow:
Posts & Comments
The PRP Facebook Group is built on a solid foundation of questions (posts) and answers (comments). Any topic is fair game as long as it is related to the PRP experience. Year after year the engagements hold steady
- More than 1,000 posts,
- More than 15,000 comments, and
- More than 25,000 reactions, e.g., Like, Love, Sad, etc.
Sharing
Within the PRP global community it can be said that “People who care … share and people who share … teach.” New members quickly learn another truism: “What works for one doesn’t work for all. As a community we can share both the disappointment of a flare and the joy of a long-awaited healing milestone. We can offer a shoulder to cry on and or a partner for your Dance of Joy. All we ask is that you engage with posts, comments and reactions.
Religion & Hugs from Afar
For those who want to invoke a Higher Power, the PRP Facebook Support Group is a venue of tolerance. Some of us pray, some hug, some just think good thoughts. Within the PRP community, goodwill comes in a variety of flavors. What we don’t do is preach.
Social-Political Issues
Other than the legalization of marijuana for medical purposes, and issues related to the Federal Drug Administration, step therapy, access to affordable treatment options and funding for the National Institutes of Health — the PRP Facebook Support Group is apolitical. We focus squarely on PRP-related issues.
Videos & Inspirational Posters
The PRP Facebook Support Group is a “Closed Group” where members expect a sharp focus on all things PRP. Please post “uplifting” videos as a comment to a post rather than as the post. Also, indicate the relevance to PRP. The goal is to minimize visual clutter.
Unauthorized Selling 
The PRP Facebook Group is not a captive audience for marketers of sunglasses and other products and services. We know from experience that our members will gleefully blow the whistle on any charlatan seeking financial gain at our expense. Everyone is on high alert. Revocation of membership is swift. The TIERNEY LYNCH RATTI MEMORIAL DELETE BUTTON made famous by the late Tierney Ratti will be used judiciously to protect all our members.
YOU ARE NOT ALONE. WE ARE IN THIS TOGETHER.
In March 2014, members of the PRP Support Group were asked the question: “Why should a PRP patient join the PRP Support Group and share?” The 11 reasons listed below represent the “sharings” of 19 patients and caregivers who responded.
- To better understand pityriasis rubra pilaris through the collective, first-hand experiences of those who have been afflicted. — We are in this together.
- To provide — and to receive — encouragement and emotional support. This is especially important in the absence of an existing support system. — We are in this together.
- To minimize loneliness and feelings of isolation. To know that we are not alone. We are a community of kindred spirits. — We are in this together.
- To effectively manage expectations and maximize hope. We want more than our fair share of good news and are willing to work for it. — We are in this together.
- To lighten the burden placed on loving family members by sharing that burden with the PRP community. — We are in this together.
- To recognize that everyone has their own version of PRP and what works for one may not work for another. We can, however, find effective ways to cope with pain, anxiety, stress, depression and frustration. —We are in this together.
- To promote a better understanding of our disease within the PRP community by sharing our personal experiences with treatments, dermatologists and other healthcare professionals. —We are in this together.
- To promote participation in bona fide research projects designed to improve the diagnosis, treatment and understanding of PRP by the medical community. We must find ways to enlighten dermatologists and other healthcare professionals. — We are in this together.
- To maintain a core value of acceptance, understanding and empathy. — We are in this together.
- To vent to each other when our pain is too great, our frustrations unbearable and our fear overwhelming. — We are in this together.
- To meet a fellow PRP face to face, in the flesh. Isn’t it about time we hugged? — We are in this together.