How to tell your story Whether you are a patient or caregiver, you should be prepared to tell your story to others? When your audience is a loving member of your family, appreciate the fact that they care. You control the narrative. When telling the story of your PRP journey, NEVER begin with “Once upon […]
How to tell your story Read More »
Do we know what causes PRP? To the never-ending frustration of the PRP global community, we do not know what causes PRP. We suspect, however, that genetic factors, an abnormal immune response, or vitamin A deficiency may be involved. There is simply insufficient data on which to base a conclusion. What we can say with
Do we know what causes PRP? Read More »
Is there a cure for PRP? According to Merriam-Webster Dictionary, a CURE usually refers to a complete restoration of health, while TREATMENT refers to a process that leads to an improvement in health, but may not include the complete elimination of disease. The consensus among dermatologists is that there is NO CURE for pityriasis rubra pilaris. This
Is there a cure for PRP? Read More »
From the Editor…Rather than lament the forced hiatus of the PRP Survival Guide and watch Game of Thrones, I have decided to tweak “The Basics” a wee bit. Okay…more than a wee bit. To ancient Greeks and Egyptians the mythical Phoenix was a symbol of renewal and rebirth. While the magnificent Phoenix lived for
The Rebirth of Our Phoenix Read More »
There is no excerpt because this is a protected post.
Protected: Tierney: The Global Vigil Continues Read More »
From the editor… Every so often I lament the fact that after (or in spite of) six years I have been unable to create or inspire a community of PRP parents within the PRP Facebook Community. That doesn’t stop me from raising the issue again in hopes that a Coalition of PRP Parents & Kids
Coalition of PRP Parents & Kids Read More »
PRP by Greg Shalless (PRP Onset January, 2008. Duration: Two years) Pityriasis Rubra PilarisI don’t want to sound too alarmist,But your skin turns bright redAnd in layers is shed –Who needs this kind of catharsis? It happens when you’re quite matureAnd you lose any sense of allure,It will no doubt cause tearsAnd be with you
PRP — Greg Shalless Read More »
From the Editor… The PRP Alliance utilizes the email technology developed by Constant Contact. They manage our email list, facilitate email distribution and provide the support for email design. No one is forced to be on the PRP Community Email List. You can unsubscribe at the bottom of any email you receive. It’s that simple. But keep
Before You Opt Out Read More »
The following datapoints represent the “core” data collected via the PRP Worldwide Census. With this information we can build a more accurate profile of the PRP community. ✽ Elapsed time between onset and diagnosis ✽ Elapsed time between onset and remission ✽ Onset age by decade of life ✽ Misdiagnoses ✽ Biopsies as a diagnostic tool ✽ Survey PRP patients in remission ✽ Survey PRP children
What is “Core” Data”? Read More »