A BETTER MOUSETRAP
The server bank that has hosted the PRP Alliance website since October 2014, imploded unexpectedly in mid-January, 2017. For the past two months all efforts to reconstitute the PRP Survival Guide have failed. Bottomline: Nearly 500 articles and 300 associated images have been vaporized.
I am turning this disaster into an opportunity to build a better mousetrap.
Towards this end I invite members of the PRP Facebook and RareConnect communities to read the current list of BASIC questions a Newbie might ask. What does a newly diagnosed adult patient or the parent of a newly disgnosed child want or need to know in the first 48 hours?
Nearly 41 years ago a newborn screening blood test confirmed that my newborn daughter had an "inborn error" called phenylketonuria or PKU, a rare metabolic disorder. Her mother and I were immediately summoned to the Emergency Room where we met a team of healthcare professionals that included a geneticist, social worker, Registered Nurse, pediatrician and a mental health profession (for the parents). There was NO learning curve. We received a crash course in PKU and were connected with the PKU Network (parents and kids). Awareness was an essential part of Marisa's treatment plan.
Fast forward to 2017 and PRP. From the shared experiences and insights of the PRP community, we know that a newbie — adult or child — is typically set adrift by healthcare professionals with little or no information about the future challenges that PRP patients and caregivers will face.
I am NOT soliciting ANSWERS too these questions. I just want some feedback to better understand the QUESTIONS a newbie — patient or caregiver — SHOULD ASK in the first 24 hours.
Part 1 — PRP BASICS
- What is pityriasis rubra pilaris (PRP)?
- What are the causes of PRP?
- How rare is PRP?
- What are the variations (types) of PRP?
- What is the long-term outlook for adults and children with PRP?
- How is PRP diagnosed?
- What are the most common onset symptoms of PRP and how do they progress?
- What are the stages/phases of PRP, e.g., onset through remission/management?
- What are the basic treatment options for PRP?
- What are the challenges of living with PRP?
- How bad is this going to get?
- How do patients and their caregivers survive PRP?
- What is the status of PRP Research?
Thanks in advance for any suggestions you post as