An Urgent Message To
All Members Of The
PRP Support Group
On October 2, 2024 — without any warning — Facebook Technology removed our the Facebook-based PRP Support Group.
- I made an immediate appeal which meant “clicking a button and hoping for the best.”
- Within a few hours my appeal was summarily denied and our PRP Facebook Group, founded in June 2008, vanished.
- A total of 2,371 members lost access to a decade of important healthcare information representing over 300,000 posts and comments. The archives documented the journeys of nearly 5,000 PRP patients.
- We have been able to re-established a Facebook-based PRP Support Group and invite PRP refugees (patients, caregivers and supporters (family and friends) to join. We already have over 600 members. If you were a victim of the “October 2 Massacre”, please CLICK HERE and rejoin your kindred spirits.
We will continue to move forward – the favorite direction of every PRPer.
Current & Future Member Orientation
Membership in the Facebook-based PRP Support Group includes the following:
- Patients diagnosed with PRP
- Patients awaiting confirmation of a PRP diagnosis
- Caregivers of a patients diagnosed with PRP
- Caregivers awaiting confirmation of a PRP diagnosis
- Supporters (family or friend) of a patient diagnosed with PRP
- Healthcare Professionals currently treating a PRP patient, e.g., dermatologists and/or primary care physicians.
Whether patient, caregiver or supporter, membership in the Facebook-based PRP Support Group requires some “up front sharing”:
- YOUR ROLE
Options include: patient, caregiver, other (family or friend), or healthcare professional. - PATIENT LOCATION
Enter the country in which you live. We ask residents of the USA and Australia to include State and residents of Canada to 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, e.g., ask questions and comment. Email addresses are NEVER shared with third parties — even PRP researchers. - COST
Membership in the PRP Support Group is FREE. There are no dues. Consider the sharing of role, location and email address as the price of admission for all members.
We are a CLOSED group serving PRP sufferers and their caregivers.
Based on the estimated populations for 2025 and a PRP prevalence rate of one PRP patient in a population of 400,000, there are aren’t many of us.
- EU: 744.7 million, 1.861 PRP patients
- USA: 347.2 million, 868 PRP patients
- United Kingdom: 69.6 million, 174 PRP patients
- Canada 40.1 million, 100 PRP patients
- Australia: 27.0 million, 68 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. PRP is 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 with kindred spirits on AOL — You’ve Got Mail.
Inspired by Jean-Luc Deslauriers, a Canadian, the original PRP Support Group was formed in 2006. 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. He also recruited Tierney to become the Administrator of the Facebook group.
In 2014 Tierney recruited Bill McCue to be a co-Administrator. In September 2020, Tierney passed away and Bill continued as Administrator until his retirment on December 31, 2024.
Today over 600 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 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, e.g., like, love, care, etc.
Religion & Hugs from Afar
For those who want to invoke a Higher Power, the Facebook-based 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.
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 Support Group on Facebook is a “Closed Group” where members can expect a sharp focus on all things PRP. The goal is to minimize visual clutter. Please post “uplifting” videos as a comment to a post rather than as the post. Also, indicate the relevance to PRP.
Unauthorized Selling 
The Facebook-based 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 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.