PRP Facebook Membership Milestone

From the Editor…
A milestone is defined as “an event or achievement that marks an important stage in a process.” PRP patients and caregivers know about milestones. We already celebrate important milestones in our journey from onset through remission.

✽  Ability to sweat
✽  Return of fingernails to pre-onset glory
✽  Return of hair
✽  A good night’s sleep
✽  Finding a treatment option that is affordable
 Returning to the workplace

Now it’s time for the PRP Facebook Support Group to celebrates its own milestone. On November 3, 2017 — just three days into PRP Awareness Month — Tim W from Mackinaw, IL became the 1,100th member of the PRP Facebook community.

Think about it. Formed in April 2013 by Jonah Grant-Scarfe (Vancouver Island, British Columbia, Canada), it took the PRP Facebook Community nearly two and a half years to reach 500 (September 6, 2015). Membership milestones have continued unabated.

   600 on March 21, 2016 — 166 days
   700 in early October, 2016 — 199 days
   800 on January 2, 2017 — 88 days
   900 on April 15, 2017 — 103 days
   1,000 on July 10, 2017 — 86 days
   1,100 on November 3, 2017 — 116 days

Predictably, the PRP Facebook population ebbs and flows with flows outpacing ebbs. On average in 2017, it takes three months to add 100 members. At that rate, the 1,200 member milestone  before Rare Disease Day (February 28) and 1,500 “mega” milestone by  PRP Awareness Month (November 2018).

How to Join the PRP Facebook Support Group

For those who are seasoned Facebookers, the PRP Facebook Support Group is relatively easy to find.

   Go to Facebook
✽   Click: “Search for people, places and things”
✽   Type: “Pityriasis Rubra Pilaris (PRP)” including the PRP within the parentheses
✽   Click: “Ask to join”

Eleven Reasons to Join

In March 2014, the members of the PRP Facebook Support Group were asked the question: Why should a PRP patient join the PRP Facebook community share? The 11 reasons listed below were the result of the 19 patients and caregivers who responded. They are just as valid for the PRP Community on RareConnect.

1. To better understand pityriasis rubra pilaris through the collective, first-hand experiences of those who have been afflicted.

We are in this together.

2. 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.

3. 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.

4. 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.

5. To lighten the burden placed on loving family members by sharing that burden with the PRP community.

We are in this together.

6. To recognize that everyone has their own version of PRP and what works for one may not work for another.  We can find effective ways to cope with pain, anxiety, stress, depression and frustration.

We are in this together.

7. To promote a better understanding of our disease within the PRP community by sharing our personal experiences with treatments, dermatologists and other health care professionals.

We are in this together.

8. 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.

9. To maintain a core value of acceptance, understanding and empathy.

We are in this together.

10. To vent to each other when our pain is too great,  our frustrations unbearable and our fear overwhelming.

We are in this together.

11. To meet a fellow PRP face to face, in the flesh. Isn’t it about time we hugged?

We are in this together.

Another option to to join the PRP Facebook Support Group is to just CLICK HERE.


Have you completed your PRP census form?

As of November 15, 2017, the PRP Community Database had identified  1,000 PRP patients who are members of the members of the PRP Facebook Community. Unfortunately, only 252 have provided their onset date, onset age and current status (active vs.remission). Please complete the PRP Worldwide Census. LEARN MORE.

 

OTR26 — PRP Facebook Membership Milestone

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