From the Editor
The PRP Survival Guide is 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. We need to harvest that knowledge for those in need of enlightenment.
Share what you have learned about PRP as a patient or caregiver. Share what you have been told by your dermatologist? Share articles you feel might be worth reading or websites worth visiting.
Please forward whatever you want to share to [email protected].
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
✽ Opthamologist
✽ Podiatrist
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 bread 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.