From the Editor
Every so often I lament the fact that after (or in spite of) six years of effort I have been unable to create or inspire a community of PRP parents within the PRP Facebook Community. That hasn’t stopped me from raising the issue again in hopes that a Coalition of PRP Parents & Kids might evolve.
Thanks to Ellen Mary Woods, Enfield, New York, the effort to create a Facebook-based PRP support group for children diagnosed with PRP and their parents has been renewed.
Based on a U.S. population of 331 million and a PRP prevalence rate of one in 400,000, there are an estimated 828 “active” PRP patient in the U.S.
An estimated 40 percent of those diagnosed with PRP are are further classified by type.
❏‹ Type 3, Classical (25%): 207
❏‹ Type 4, Circumscribed (10%): 83
❏‹ Type 5, Atypical (5%): 41
PATH FORWARD
❏‹ Step One: Take the necessary steps to bring all PRP parents and children under the banner of PRP Parents & Kids. The PRP Global Database has identified 192 patients diagnosed with Juvenile Onset PRP.
❏ Current age less than 18: 80
❏ Current age 18 or older: 81
❏ Current age unknown: 31
❏‹ Step Two: Ensure that all Juvenile Onset information scattered throughout the PRP Survival Guide funds a more appropriate home in Chapter 5.
❏‹ Step 3: Harvest Juvenile Onset-specific posts and comments archived in the PRP Facebook Support Group and place such content with PRP Parents & Kids.
OVERVIEW
❏‹ Prevalence of Juvenile Onset PRP
ADVOCACY
There will be opportunities for advocacy in the months and years ahead involving the following:
❏‹ Teaching hospitals (88 in the US)
❏‹ Society for Pediatric Dermatology (Find-A-Pediatric Derm)
❏‹ American Academy of Dermatology (Find-A-Pediatric Derm)
❏‹ Genetic and Rare Diseases(GARD) Information Center
❏‹ International Alliance of Dermatology Patient Organizations
AGE
The needs and challenges of children diagnosed with juvenile onset will vary by age. The content of the PRP Survival Guide will reflect the following classifications:
❏½ infants
❏½ toddlers
❏½ Pre-K to high school
❏½ High school
CAMP & CONFERENCE OPPORTUNITIES
❏½ AAD Summer Camps
❏½ Children’s Skin Disease Foundation/Camp Wonder
ITCH RELIEF
❏½ Besides meds, what strategies can you or your child employ? (article pending)
MENTAL WELLNESS
❏½ Surviving the emotional challenges of PRP from the perspective of the parent.
❏½ Surviving the emotional challenges of PRP from the perspective of the child.
METRICS of JUVENILE ONSET
❏½ PRP patient population – Juvenile Onset
❏½ What are the odds of getting juvenile onset PRP?
PARENTING CHALLENGES
SCHOOL CHALLENGES
PRP parents need a letter or guidelines for teachers, administrators and school nurses. The guidelines should also available as a downloadable PDF from the PRP Survival Guide.
❏½ Juvenile PRP, school-related issues
SLEEPOVERS
❏½ How do you inform as a parent of a wee one? What do you pack? What you are not allowed to forget? (article pending)
SOCIALIZATION CHALLENGES
❏½ What are the issues and strategies when dealing with everyone – including classmates. How to deal with people who stare . How to deal with bullies. (article pending)
STIGMATIZATION
❏½ What are the issues and strategies when dealing with everyone – including classmates. How to deal with people who stare . How to deal with bullies. (article pending)
TRAVELING WITH PRP KIDS
❏½ Dealing with dry airplane air and other climate-related issues, e.g., heat, cold, humidity, dryness. (article pending)
❏½ Managing meds: the need for spares of “tired and proven meds rather than OTC another antibiotic, painkillers, antihistamines (article pending)
TREATMENT OPTIONS
❏½ What are the treatment options appropriate to children based on age? (article pending)
❏½ Which kind of meds are used for kids and in which form can they be given to them (injections, pills, capsules: (article pending)
❏½ How does age impact light therapy, e.g. how long and how high? (article pending)
❏½ Is alternative medicine an appropriate option for children? (article pending)
❏½ What do I need to know about UV light therapy?