Future Member Orientation
From Bill McCue, Administrator
PRP (Facebook) Support Group
A MEMBER of the PRP Support 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
Whether patient, caregiver or supporter, membership in the PRP Support Group requires some “up front sharing”:
- YOUR ROLE: Patient, caregiver, other family, friend, etc.
- 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.
As a member you will have full access to the Facebook Support Group — a CLOSED group serving PRP sufferers and their caregivers.The sharing of location and email address is a new member’s price of admission.
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
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) Support 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, there are some common sense guidelines to understand and follow.
Posts & Comments
The PRP Support 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. During the period February 2021 through January 2022, a total of 2,000-plus PRP patients and caregivers were responsible for
- 1,897 posts,
- 32,323 comments, and
- 51,652 reactions, e.g., Like, Love, Sad, etc.
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 share both the disappointment of a flare and a long-awaited healing milestone. We can offer a shoulders to cry on and or partners 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 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.
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 Support Group is apolitical. We focus squarely on PRP-related issues.
Videos & Inspirational Posters
The PRP Support Group is a “Closed Group” where members expect a sharp focus on all things PRP. Please post “uplifting” videos as the comment to a post rather than as the post. Also, indicate the relevance to PRP. The goal is to minimize visual clutter.
The PRP Support 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.