From the Editor
One of the many frustrating aspects associated with pityriasis rubra pilaris is reflected in the following mantra:
“What works for one doesn’t work for all.”
Over the past few years, however, I have taken the opportunity its to amend the Treatment Mantra to reflect a more positive reality:
“What works for one doesn’t work for all,
but if it works for ONE,
then there is hope for YOU.”
When a PRP patient or the parent of a PRP child has a question about the efficacy of specific medication, they have ONE option: to post their question to the 2,200-plus members of the PRP Facebook Support Group and hope for lots of comments. Comments from the Land of Chat are generally forthcoming.
Moreover, the odds are pretty good that a comparable question has been asked many times before by others. Unfortunately the responses to those earlier, medication-specific posts have never been retained by Facebook in a manner that supports retrieval at a later date. In other words, the many insights and shared experiences regarding a specific medication shared by other PRP Facebookers over an extended period of time are not easily retrieved.
It’s time to build a better mousetrap. WHAT WORKS is that new mousetrap.
Your insights and observations will make it easier for other PRP patients and caregivers to learn more about specific medications.
While the focus is on WHAT WORKS, experiences that are less positive should also be shared. Please use “Leave a Reply” to share your insights.