What are the challenges of living with PRP?

Those who spend time any time reading the PRP Survival Guide or perusing the posts and comments found shared by members of the PRP Support Group and PRP Community on RareConnect will see references to the many challenges to body, mind and spirit associated with pityriasis rubra pilaris. PRP is a burden on every square inch of our bodies. Moreover, our minds must deal with the uncertainties associated with an under-researched rare disease. We know so little.

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 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.

The following are some of the most common challenges we face.

✽  How to deal with a lack of energy

 How to deal with unexpected flares and setbacks

✽  How to find itch relief

✽  How to maintain mental wellness

 How to manage pain

✽  How to sleep at night

✽  How to deal with the cost of healthcare

✽  How to parent a child with PRP

✽  How to deal with stress and triggers

✽  How to respond to what people say

✽  How to respond to people who stare

✽  How to function in the workplace

✽  How to find hope

The PRP Survival Guide seeks feedback from the PRP Community. What are the Top 5 challenges you face as a PRP patient or caregiver?

For more information about living with PRP.go to Chapter 4Daily Life

What are the challenges of living with PRP?

8 Replies to “What are the challenges of living with PRP?”

  1. Originally posted to the PRP Facebook Support Group on February 17, 2017. Available at https://www.facebook.com/groups/15865278115/permalink/10154932678533116/?match=dHJpZ2dlcg%3D%3D

    Tania T — Harz, Germany
    I’m a carer (caregiver in the US). PRP patients are unique! Each and everyone one of you are different, unlike many diseases PRP effects each person differently but with some similarities!

    ✽ So far no one has found a singular trigger for getting PRP!
    ✽ So far no one has found “one drug” that heals/cures everyone!
    ✽ Not everyone is going to lose there finger/toenails.
    ✽ Not everyone is going to lose there hair, whether you are on meds or not.
    ✽ Not everyone will suffer depression (fed up days I am sure will hit most)
    ✽ Not everyone has the same symptoms.

    The list goes on…….
    But…..everyone has ONE absolute similarity….we are in this together, whether patient or carer. Lets fight this together but with the uniqueness each person deserves.

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