From the Editor
The PRP Survival Guide is designed to be a repository of experiences and insights shared by PRP patients and their caregivers. Collectively, the PRP community possesses a wealth of practical knowledge about pityriasis rubra pilaris. Only we are best positioned to harvest that knowledge.
Share what you have learned during clinic visits with your dermatologist. Share articles you feel might be worth reading or websites worth visiting. Here is the first question we ask about PRP Clinics and Self-Advocacy
What have you learned to make clinic visits more productive?
Bill M — Plano, TX
IMHO — Clinic visits provide three major opportunities for self-advocacy:
Pre-Clinic PREPARATION — Don’t go to your PRP clinic without questions to ask and information to share.
Clinic PARTICIPATION — The dermatologist is REQUIRED to do specific tasks. They ask questions and take notes. They must cross the t’s and dot the i’s; You should take notes as well.
Post Clinic EDUCATION — Only one in 400,000 are diagnosed with PRP and YOU may be one of the few PRP patients your dermatologist will ever treat in their career.
Bill M — Plano, Texas
IMHO — Dermatologists should EXPECT that a PRP patient will benefit from professional counseling. A referral to a mental health professional (name and contact information) should be part of every PRP Treatment Plan. The dermatologist should also be identifying other healthcare professionals that PRP patients are likely going to need.
✽ Ear specialist
A PRP patient or caregiver should not be surprised “down the road” with a problem that is likely to need more expert care than a dermatologist can offer. The dermatologist can manage expectations by being honest with their patient.
And while they are at it, how about a referral to the Genetic and Rare Diseases (GARD) information Center where they will be be abe to access the GARD PRP Report that includes important references to the PRP Appliance and the National Organization of Rare Disorders. The NORD PRP Report is essential reading for every newly diagnosed PRP patient and their caregiver(s). Follow the brad crumbs and “newbies” will be able to connect with the PRP Facebook Support Group, the PRP Community on RareConnect, and a link to the PRP Survival Guide.
Standing Up for Your Health:
Self Advocacy for Patients with Rare Diseases
The Aplastic Anemia & MDS International Foundation developed a self-advocacy brochure that is worthy of note. Standing Up for Your Health: Self Advocacy for Patients with Rare Diseases
Principle 1 — Build a Strong Healthcare Team
✴Find an Expert in Your Rare Disease
✴Choose Healthcare Providers Who Are a Good Fit for You
✴Select a Care Coordinator
✴Do Your Part to Become an Empowered Patient
Principle 2 — Learn About Your Disease and Treatment Options
✴Get Up-To-Date Information
✴Find Trustworthy and Reliable Information on the Internet
✴Learn About Your Treatment Options
✴Keep an Eye on Your Care
Principle 3 — Make the Most of Every Office Visit
✴Prepare for Each Visit
✴Ask Questions, Get Answers
Principle 4 — Keep Careful Track of Health Information
✴Find an Organization System That Works for You
✴Take Medical Records with You When Traveling
Principle 5 — Build a Strong Personal Support Team
✴Get Support From Family and Friends
✴Get Support From a Health Advocate
✴Get Support From Other Patients
✴Get Support From Your Healthcare Team
Principle 6 — Help Those You Love to Stand Up for Their Health
✴Standing Up for Your Child’s Health
✴Adolescents Transitioning to Adult Care
✴Standing Up For Your Parent’s Health
Download the PDF: Standing Up For Your Health