Chapter 3 — Living with PRP



From the Editor

With a proper diagnosis of pityriasis rubra pilaris, PRP patients and caregivers can address the daily challenges of body, mind, and spirit. Chapter 3 focuses on those challenges from the patient perspective.

In May 2015, a group of PRP patients and caregivers shared their random observations about living with PRP. Some of their observations make us laugh, some make us cringe with a returning memory. PRP is a journey … too often a long journey. And no one know the road from onset through remission better than the PRP community. We were the “experts” in 2015 and we are still the “experts” in 2019. If we are NOT the “experts” from the patient perspective, then who is?

Observations from the Land of Red and Shed

PRP is a burden on every square inch of our bodies. But the real challenge of living with PRP is maintaining a heathy spirit. It has been said that the most effective treatment option for PRP is a tincture of time and pinch of hope. While we have no control of time, we can certainly help one another find hope.

The PRP Facebook and RareConnect communities create a welcoming environment of kindred spirits — a Land of Hope. Even though we each lay claim to our own unique version of PRP, we share a common bond. We are a community. A family. We are fellow travelers on the PRP journey from onset towards remission.

What are the challenges of daily life with PRP?


DAILY LIFE INDEX

boldface green = updated content

A
alcohol, use of

B
bathing, showering

blood work, labs

C
caregivers, issues related to

clothing, e.g., sauna suits, shirts, hats, etc.

clinic self-advocacy, e.g., preparation, participation, education

communicating with family and friends

comorbidities, impact on treating PRP

complications

coping strategies

✽  People who stare
✽  Depression  FUTURE

cost of PRP healthcare, issues related to

D
dexterity, hands and fingers

disability, issues related to

✽  Americans with Disabilities Act (ADA)
✽   Patent Advocate Foundation

E
ears, impaired hearing

energy and fatigue

exercise and physical activity

eyes and impaired vision by Jan Tennant

F
family life and impaired relationships

feet

financial aid (SEE Disability)

flares and setbacks

G
Genetic and Rare Disease Information Center

gloves, cotton, nitrile, nitrile, and vinyl

H
hair

hands, palms, fingers, fingernails

healing milestones, managing symptoms

help, finding support

hope, pinch of

✽  I hate holly more than PRP — A Remissioners Retrospective

housekeeping

humidifiers

humor — or is it humour  — The Bright Side of the Dark Side

I
infections, e.g., flu, colds, etc.

insurance, health, related issues   FUTURE

itching, itch relief

J
joints, joint pain

L

legs, feet and impaired mobility

legs

✽  swollen legs

lip care (see mouth, teeth, lip care)

lymph nodes, glands and bumps

M
makeup, use of

marijuana, medical

medical/surgical procedures unrelated to PRP, e.g., mammograms   FUTURE

Meet & Greet, FaceTime, Skype

mental  wellness

✽  staying positive

mobility

moisturizing

✽   free Aquaphor and Eucerin program

mouth, lip care

N
nutrition, vitamins and dietary supplements

National Organization of Rare Disorders

✽  NORD PRP Report — Genesis
✽  NORD PRP Report — LINK

✽  NORD PRP Report, Summary/Handout  FUTURE

P
pain and pain management

parenting challenges

patient self advocacy (SEE clinic visits)

pregnancy

PRP Journeys — Tales of the road less traveled

PRP Alliance, Inc

PRP Community on RareConnect

PRP Facebook Support Group

PRP Global Database and 2019 Census

PRP Survival Guide

R

relapses, setbacks

S
scalp

shedding, flaking

sleep, sleep deprivation

 

stress and triggers

sunlight and UV exposure

sweating and thermoregulation

swimming: pools, lakes and ocean

T
tattoos

teeth, dental care

testimonials, snapshots and blogs

time, tincture of   FUTURE

travel and vacations

✽   long distance travel   FUTURE
✽   travel insurance, pre-existing conditions   FUTURE

W
weight, e.g. gaining weight, losing weight

what to say to rude people

workplace-related, e.g., co-workers, employers


If there is a question in need of an answer or a general topic you think should be covered in Chapter 3, please send an email to editor@prpAlliance.org.