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
AGE
The needs and challenges of a patient diagnosed with juvenile onset will vary by age.
❏½ infants: (article pending)
❏½ toddlers: (article pending)
❏½ pre-teens: (article pending)
❏½ teenagers: (article pending)
❏½ adults: (article pending)
CAMP
❏½ AAD Summer Camp (circa 2017)
❏½ AAD Summer Camp (circa 2015)
HOBBIES & PLAYTIME
❏½ What activities are compatible with PRP? (article pending)
ITCH RELIEF
❏½ Besides meds, what strategies can you or your child employ? (article pending)
MENTAL WELLNESS
How do you and your child survive the emotional challenges of PRP? What help both of you to stay strong and positive? (article pending)
NUMBERS
❏½ PRP patient population – Juvenile Onset
❏½ What are the odds of getting juvenile onset PRP?
PARENTING
❏½ parenting challenges
❏½ PRP parents respond
SCHOOL
❏½ 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.
❏½ juvenile PRP, school-related issues
SLEEPOVERS AND CAMPS
❏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
❏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
❏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?
❏½ Vitamin D Deficiencies
