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 told by your dermatologist? Share articles you feel might be worth reading or websites worth visiting. Use “Leave a Reply” to share.
It is estimated that 45% of all patients diagnosed with pityriasis rubra pilaris are children. The challenges facing parents are extraordinary. This sub-chapter focuses specifically on those special needs.

PRP PARENTING INDEX

CAMP

✽  AAD Summer Camp (circa 2017)

✽  AAD Summer Camp (circa 2015)

NUMBERS

✽    PRP patient population — Juvenile Onset
✽    What are the odds of getting juvenile onset PRP?

PARENTING

✽   parenting challenges
✽    PRP parents respond

SCHOOL

✽  A wide range of topics to include dealing with teachers, administrators and the school nurse; accommodations regarding fatigue, application of topicals, etc. PRP parents need a letter or guidelines for teachers, administrators and school nurses, delivered to teachers, administrators and the school nurses by the parent. The guidelines should also available as a downloadable PDF from the PrP Survival Guide.
✽   juvenile PRP, school-related issues

https://prpsurvivalguide.org/issues-related-to-juvenile-onset/

SLEEPOVERS AND CAMPS

✽  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

✽  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

✽  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

✽   Dealing with dry airplane air and other climate-related issues, e.g., heat, cold, humidity, dryness. (article pending)
✽   Managing meds: the need for spares of “tired and proven meds rather than OTC another antibiotic, painkillers, antihistamines (article pending)

TREATMENT

✽   What are the treatment options appropriate to children based on age?  (article pending)
✽    Which kind of meds are used for kids and in which form can they be given to them (injections, pills, capsules:  (article pending)
✽    How does age impact light therapy, e.g. how long and how high?  (article pending)
✽    Is alternative medicine an appropriate option for children?  (article pending)
✽    What do I need to know about UV light therapy?
✽    Vitamin D Deficiencies