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 4 — Daily Life
What are the challenges of living with PRP?