Whether you are a PRP patient or a PRP caregiver, The NORD PRP Report (National Organization of Rare Disorders) and the GARD PRP Report (Genetic and Rare Diseases Information Center, National Institutes of Health) provide an easy-to-understand overview of pityriasis rubra pilaris.
Both the NORD PRP Report and the GARD PRP Report include a Google Translate button for those who prefer an alternative to English.
PRP patients and PRP caregivers should be especially encouraged to share the link to the 5,000-word NORD PRP Report with family, friends and healthcare professionals.
TOP 10 QUESTIONS
The following 10 questions fall under the heading: What PRP patients and caregivers WANT to know. There are other questions, but this is where we start.
- Why is it so difficult to diagnose PRP
- What are the odds of getting PRP?
- Do we know what causes PRP?
- Is PRP an autoimmune or auto-inflammatory disease
- Is there a cure for PRP?
- How do PRP symptoms progress? (phases & stages)
- What are the “Quality of Life” impacts of PRP?
- How does healing progress?
- What does a PRP parent need to know?
- How long will my PRP last? (duration)
Whether you are a patient or caregiver, you should be prepared to tell your story to others? Your audience may be a loving member of your family or a rude and insensitive onlooker in the checkout line at Walmart. Let’s make sure that your ducks are lined up.
The goal of the PRP Glossary of Words & Jargon is to QUICKLY take some of the mystery and fear out of PRP… not a lot … just a wee bit. If pityriasis rubra pilaris has left you numb, scared, confused and isolated, then the PRP Glossary may be a brief detour on your PRP journey. You be the judge.
It has been estimated that only one in 20 dermatologists will diagnose or treat pityriasis rubra pilaris during their professional careers. Whether your goal is to obtain a second opinion and reconfirm your PRP diagnosis or find a local dermatologist who has prior experience treating PRP or find a more inquisitive dermatologist who wants to become PRP-savvy, have a plan.
Every PRP patient and PRP caregiver should be aware of the available resources, e.g., PRP Facebook Support Group, PRP Global, Database, GlobalSkin, etc.
In 2016, the Aplastic Anemia & MDS International Foundation received a grant to develop a self-advocacy brochure for patients with rare diseases. Standing Up for Your Health: Self Advocacy for Patients with Rare Diseases, is more than a brochure, it’s a strategy worthy of note. While it is unlikely that rank and file PRP patients and caregivers will go cover-to-cover or adopt all of the suggestions, but, as they say, “There’s gold in them dar’ hills”.