NOTES Describe Juvenile Onset PRP ✽ We want to describe Juvenile Onset PRP rather than PRP in general ✽ This should be a general overview and include Type 3, 4 and 5 ✽ What are the SPECIFIC challenges facing PRP parents and PRP children? Describe your child’s version of PRP ✽ We want to describe the child’s SPECIFIC […]
School Letter Part 1 Read More »
From the Editor… There does not appear to be an official definition of REMISSION as it applies to pityriasis rubra pilaris. REMISSION comes from the Latin remissionem, meaning “relaxation, a sending back.” If something difficult lets up, you’ll be able to relax a little. Here are some definitions to ponder. When you are finished, share
The MANY definitions of remission Read More »
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 about juvenile onset PRP as a parent/caregiver. Share articles you
PRP, Children and Parents Read More »
From the Editor… For any PRP parent with a PRP kid in need of a summer experience in a PRP-friendly environment, consider Camp Discovery. What they say about themselves: Camp Discovery was founded in 1993 and offers a summer camp experience like no other. Every summer, the American Academy of Dermatology sponsors six weeks of
American Academy of Dermatology Summer Camp Read More »
From the Editor… For those who accept the prevalence estimates established by Dr. Griffiths in March 2003, juvenile onset PRP represents 45% of the patient population. The PRP Community Census has Identified 149 PRP patients who have reported a diagnosis of juvenile onset PRP. Considering the fact that 817 PRP patients have not indicated whether they
The PRP Patient Population — Juvenile Onset Read More »
From the Editor On June 11, 2017, a PRP parent posted the following message. It has been re-posted in the PRP Survival Guide in hope that other comments will be added over time. April T — Terryville, CT My son, Blake, who is 7 years old, has had PRP since he was 6 months old. We recently found
Juvenile Onset — Vitamin D Deficiencies Read More »
From the Editor… How does pityriasis rubra pilaris present? What are the “signs and symptoms” available to a dermatologist that signal the possibility of a pityriasis rubra pilaris diagnosis. What are the clues dermatologists seek? Here is what a search of the internet will find. Healthline.com #1 Pink, red, or orange-red scaly patches on your skin. The patches are usually itchy.
Signs & Symptoms of PRP Read More »
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 can harvest that knowledge. Share what you have learned about PRP parenting as a patient or a parent. Share what you have been
PRP Parenting Index Read More »
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. PRP patients and caregivers often require one or more referrals
Building a PRP Team of Healthcare Professionals Read More »
From the Editor… There are so many activities that could lessen the burden of pityriasis rubra pilaris on the body, mind and spirit of PRP patient and caregivers. ✽ Some efforts may be undertaken by one person; other efforts will require a group. ✽ Some activities can be accomplished at no cost, others will require funding.
PRP Advocacy Agenda: June 2017 Read More »