It is especially fitting that the global PRP community celebrate the life of Tierney Ratti and a her nearly half-century PRP journey.
While the symptoms of PRP first appeared in 1972 at the age of 11, it wasn’t until November 1994 before she reached out to the National Organization of Rare Disorders in search of other PRP patients. Tierney sent a letter to “Mr. Pack and Mr. Reid” and shared her story. This was the beginning of a PRP patient advocate.
For the next several years Tierney connected with other PRP patients and used AOL to share their journeys. For those who participated, the AOL tagline, You’ve Got Mail” could have been amended to: “You’ve Got Mail and We’ve Got PRP”.
In November 1997 Inspired by Jean-Luc Deslauriers, a Canadian, the original PRP Support Group was formed. Membership has ebbed and flowed over the past two decades. Using list-serve technology, members traded an average of 150 emails each month.
In 2008 another Canadian and PRP sufferer, Jonah Grant-Scarfe, recognized the value of Facebook as an alternative to trading emails.
While the PRP Facebook Support Group didn’t immediately catch on, there were 120 members by November 2013. That’s when Tierney took over as Administrator. It didn’t take long for “PRP Facebookers” were beginning to understand and appreciate Facebook technology.
Now fast forward to September 2020 and see the fruit of Tierney’s labor for the past seven years – part of her legacy. Today, membership has surpassed 2,040. Each month an average of 30 new members join the Land of Chat. During the period January 1 to August 31, 2020. This is part of her legacy.
❏» New members: ❏» Posts: 1,004 (125 per month) ❏» Comments: 16,791 (2,099 per month) ❏» Reactions, e.g., like. care. love, etc: 25,505 (3,188 per month)
Tierney may be gone and her PRP journey is over, but now is the time for the global PRP community to celebrate her caring, sharing and teaching.
This section of Tierney’s Memorial offers 200-plus comments posted by PRP Facebookers in the Land of Chat. It doesn’t take long to appreciate the scope of Tierney’s caring and sharing.
Caring, Sharing & COUNTING
Tierney was more than just caring and sharing. She wanted PRP patients to “Stand up and be counted”. This section of Tierney’s Memorial asks PRP patients/caregivers to update their patient profiles and identify PRP-savvy dermatologists. Just another way to say “Thank You”.
Remembering Tierney
This section of Tierney’s Memorial is an opportunity for PRP patients/caregivers to expand their remembrances beyond 500 and even 1,000 words. Submit your stories via email to editor@prpSurvivalGuide.org.
Imagine, if you will, that Tierney’s friends and family assemble in a living room (gotta be a big freakin’ living room) and trade stories. The sadness that brought everyone together quickly changes to raucous laughter and oneupsmanship. So, what “Tierney Tale” do you want to share in detail?
The Happy Dance for Tierney
This section of Tierney’s Memorial provides EVERYONE with the opportunity to tell stories that will make everyone else smile. Either use “Leave a Reply” to share a ‘laughable moment” where Tierney laughed or made you laugh. Submit your stories via email to: editor@prpSurvivalGuide.org
So grateful for Tierney’s brave heart and how warmly she welcomed the bewildered, frightened newbies into the PRP community, and shared what she knew.
In living her life, Tierney modeled how to maintain a life of service , effective activism, and cheer despite decades of PRP.
Thank you, Tierney.
God bless her for all she did. I’ve had this disorder since 2004 and probably won’t live to see a great breakthrough but we keep moving forward. Hope springs eternal.
Tierney was so inspiring. She was kind and helpful when I joined the group, as my hubby Paul’s caregiver. I cannot imagine suffering with that awful disease for as long as Tierney did, but she was always upbeat and encouraging to others going g through their own journey. Rest easy, Tierney, you certainly fought the good fight.