Tierney’s Story (circa 1994) Tierney Ratti did not formally chronicle her PRP journey beyond the following letter. 30 November 1994 Dear Lady and Gentlemen: After being diagnosed with pityriasis rubra pilaris in October, I contacted the National Organization for Rare Disorders, Inc., and was given your names as others with this disease. I have spoken […]
Tierney’s Story through 1995 Read More »
While her PRP journey has ended, Tierney Ratti’s family has created a Memorial Fund to help pay for her “end-of-life transition and fulfill her final wishes”. Charlie has asked me to post the following here — to the PRP Facebook community she loved. From the Ratti Family Tierney Sue Lynch Ratti, my devoted wife and
Tierney’s GoFundMe Campaign Read More »
Editor’s Note: “She is gone. Her journey is over.” That was the message shared with the 2,103 members of the PRP Facebook Support Group. While the immediate reaction was sadness, it didn’t take long for the Land of Chat to honor Tierney’s memory. The Land of Chat was aware of Tierney’s hospitalization. Her daughter, Samantha, posted the news
Editor’s Note: Murray Rose, PRP patient snf unregistered curmudgeon. Onset of PRP symptoms in August at the age of 66. Currently lives in Surrey British Columbia with his wife, Carel and a chainsaw. Murray has been one of the “Three Amigo Administrators” serving the 2,000-plus members of the PRP Facebook Support Group, a.k.a. the Land of Chat. Having lost
Words from Murray Rose Read More »
Tierney Lynch Ratti, 61, of Virginia Beach, Va., formerly of Vinton, Iowa, died Sept. 12, 2020, at the Sentara Hospice House, in Virginia Beach. She had suffered for several years from complications of pityriasis rubra pilaris, commonly referred to as PRP. Her body has been donated for medical research, with interment at a later date. Tierney was
Obituary — Tierney Lynch Tierney Read More »
Editor’s Note: While pityriasis rubra pilaris is considered gender neutral, (see NORD PRP Report), there are those who believe it may be a “wee bit” more prevalent in children diagnosed with Juvenile Onset. Of course Ginny Maxwell (and her PRP kiddos represent a 50-50 gender allocation. The premise of a Ted Talk video (circa 2013) recently unearthed by
Adding Gender to “Core Data” Read More »
Do you know how to make a disability claim in Canada? Murray Rose has provided a link to an article he feels is very good at explaining a step by step procedure to follow. The article represents the first HARVESTING of information We will build from this. DISCLAIMER: Neither the PRP Alliance, PRP Survival Guide nor PRP Canada
How to make a disability claim in Canada Read More »
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
Tierney Ratti Memorial Read More »
by Murray Rose, Surrey, British Columbia A common PRP symptom we share is that the skin on the soles of our feet thickens and cracks. These fissures make walking or standing difficult — if not impossible. I experienced both to some degree, not as bad as some I’ve seen, but not as good as others either. Many
Foot Care Nurse versus a Podiatrist Read More »
Why do they starewhen they are looking at me?Why do they stare? By Alison B, Lake of the Ozarks, Missouri Am I different?Am I weird by red scaly skin,flaking down? In the mirror I can see a different person.Red and soreblotchy all over.White flaky skinon my clothesand on the floor. I cannot help PRP for
Why do they stare…? Read More »