Bill McCue

Editor’s Note – The Aplastic Anemia & MDS International Foundation developed a self-advocacy brochure that is worthy of note. It is unlikely, however, that rank and file PRP patients and caregivers will go cover-to-cover and digest every golden nugget of wisdom. With that in mind, the following represents an effort to customize their general information […]

From the Editor The PRP Survival Guide is designed to be a repository of experiences and insights shared by PRP patients and their caregivers. Collectively, the PRP community possesses a wealth of practical knowledge about pityriasis rubra pilaris. Only we can harvest that knowledge. Share what you have learned about PRP and footwear as a

  Brenda Pauline i used aquaphor religiously but I must say there is probably no cream I haven’t tried. I used heavy greasier stuff at first. Aquaphor, eucerin, gold bond medicated cream, cerave… really I used everything. Bathroom looked like a pharmacy. Now I use aquaphor on some of the drier spots and aveeno on

https://www.facebook.com/groups/15865278115/permalink/10158628990338116/ Link to Original Post   Steven B, Northern California First off I want to say thank you for the group acceptance. I have had PRP for the past year and a half and JUST was diagnosed a couple months ago. (Dermatologist thought I had psoriasis for over a year until I got a second

From the Editor The PRP Survival Guide is designed to be a repository of experiences and insights shared by PRP patients and their caregivers. Collectively, the PRP community possesses a wealth of practical knowledge about pityriasis rubra pilaris. Only we can harvest that knowledge. Share what you have learned about PRP and PROGRESS as a

This section of PRP 101 focuses on the daily challenges of body, mind, and spirit encountered by PRP patients and their caregivers. The topics range from ALCOHOL to WORKPLACE. Every PRP journey is unique. The phrase, “my version of PRP”, helps underscore the fact that “What works for one does not work for all.” Forewarned

The topic of Mental Wellness requires a more robust commitment in the PRP Survival Guide. Towards this end, an effort will be made during PRP Awareness Month to discuss issues related to Mental Wellness. Questions related to… FAMILY LIFE ❏» What are strategies to maintain a healthy family life? family life and impaired relationships >>>

Compared to other more common skin disorders, PRP has very little research in the pipeline. PRP-specified research projects over the past eight years can be counted on one hand. ❏ Thomas Jefferson University Research ❏ Oregon Health and Science University Research ❏ UCLA, USC and Kaiser Permanente Research ❏ Brigham Research Institute Research PRP Global

From the patient/caregiver perspective, there are three observations to be made about treating pityriasis rubra pilaris: (1) Each PRP journey is unique. (2) You are not alone. We are on this journey together. Others have traveled the same road. There is a global PRP community (3) What works for one doesn’t work for all. This