Chapter 3 — Living with PRP



From the Editor

PRP Awareness Month (November 1-30) provides an opportunity for the PRP community to revisit the PRP Survival Guide and reassess the current information. What’s missing? What information do you want to have available. What questions are in need of answers? Share your thought via email to editor@prpSurvivalGuide.org.

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?


During the period January 1 to March 23, 2019, the PRP Facebook Support Group has generated 413 POSTS, 5,931 COMMENTS, and 8,696 REACTIONS (.e.g. Likes). Moreover, a total of 1,251 0f the 1,521 members have participated.

It has been a constant source of personal frustration over the past four years that too many of the GREAT PRP-related insights and observations shared by PRP Facebookers (posts and comments) get pushed aside by other posts. More often than not, the “great stuff” is replaced by more “great stuff”. There are TWO groups within the PRP community who lose out.

(1) Members of the Land of Chat who simply “missed” the GREAT exchanges. I call these exchanges “Lost to the List”.

(2) And then there are the 517 PRP patients who are not — for whatever reason — members here. They miss the same GREAT posts.

How do we HARVEST and RETAIN the best posts? How do we get to “good stuff” into the PRP Survival Guide where it can be shared with the entire PRP global community — PRP “Facebookers” and PRP “Emailers”?

Simply stated, it’s time for me to line up the ducks.

“In the Queue” is an effort to identify a LIMITED NUMBERS of posts from the Land of Chat that are worthy of special attention and retention. “In the Queue” includes the topic, author (truncated name and location to maintain a modicum of privacy), the date of the post, and scope. Most importantly,  there is a link to the original, unedited post for members of the PRP Facebook Support Group.

Non-members will have an opportunity — and now an added incentive — to join. CLICK HERE to access In the Queue.


DAILY LIFE INDEX

boldface green = updated content

A
acute phase

alcohol, use of

art gallery, PRP

B
bathing, showering

blood work, labs

C
caregivers, issues related to

calculating coverage (Rule of Nines)

children with PRP

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

cost of PRP healthcare, issues related to

D
dexterity, hands and fingers

dietary considerations

disability, issues related to

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, legs and impaired mobility

financial assistance

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

health insurance and related issues

hope, pinch of

housekeeping

humidifiers

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

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

inspirations

itching, itch relief

In the QUEUE

J
joints, joint pain

juvenile onset

L

legs, feet and impaired mobility

lip care

liver, testing

lymph nodes, glands and bumps

M
makeup, use of

marijuana, medical

Meet & Greets

mental  wellness

mobility

moisturizing

✽   free Aquaphor and Eucerin program

N
nutrition, vitamins and dietary supplements

National Organization of Rare Disorders

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

P
pain and pain management

parenting and PRP

patient self advocacy (SEE clinic visits)

poetry, PRP

pregnancy

PRP Advocacy

PRP Alliance, Inc

PRP Community on RareConnect

PRP Facebook Support Group

PRP Global Database and 2019 Census

PRP Journeys — Tales of the road less traveled

PRP Research

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

travel and vacations

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@prpSurvivalGuide.com