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?
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.
DAILY LIFE INDEX
boldface green = updated content
✽ People who stare
✽ Depression FUTURE
eyes and impaired vision by Jan Tennant
financial aid (SEE Disability)
✽ I hate holly more than PRP — A Remissioners Retrospective
humor — or is it humour — The Bright Side of the Dark Side
insurance, health, related issues FUTURE
lip care (see mouth, teeth, lip care)
medical/surgical procedures unrelated to PRP, e.g., mammograms FUTURE
patient self advocacy (SEE clinic visits)
time, tincture of FUTURE
✽ long distance travel FUTURE
✽ travel insurance, pre-existing conditions FUTURE
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.