by Bill McCue, Founder & President, PRP Alliance, Inc. A little bit of history… When I was diagnosed with adult onset PRP on November 28, 2012, I immediately joined the PRPSupport Group and subscribed to their email-based forum. As a newcomer to that group, I was frustrated by the lack of response to the questions I posted. […]
PRP Community Database Update Grant Read More »
. Editor’s Note: Regardless of the worthiness of any cause, you have a right say “No”.It’s very easy to say “No” when a stranger knocks on your door. Whatever they’re selling, we’re not buying. Let’s face it — we’re all getting pretty darn good at saying “No”. In fact, for most of us, “No” has become
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The PRP Alliance is working with RareConnect, an initiative of EURORDIS, the international equivalent of the National Organization of Rare Disorders. The PRP Alliance is a member of NORD and supports the PRP Community on RareConnect — a multi-language, non-Facebook option for adults with PRP and the parents of children diagnosed with juvenile onset. RareConnect
The PRP Community on RareConnect Read More »
From the Editor… There may be a place for music in the treatment of pityriasis rubra pilaris — music that brings peace and solace to the PRP community. This page is an experiment to see what “inspiration” comes our way. If music can soothe the soul, what music might others share. WARNING: Apologies in advance if
Sometimes we need to “Give a Listen” Read More »
Issues related to lips and lip care The PRP Survival Guide is 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. We need to harvest that knowledge for those in need of enlightenment. The image of a desert seemed
Dateline: November 22, 2022 — This page of the PRP Survival Guide was originally designed to be a repository of experiences and insights shared by the parents/caregivers of children diagnosed with PRP. It was also intended to serve adults diagnosed with PRP as children. With the help of PRP parents, we hope that this webpage will
PRP, Children and Parents Read More »
From the Editor… In May 2015, a group of PRP patients and caregivers shared their random observations about living with PRP. Some observations make us laugh, some make us cringe with a returning memory. PRP is a journey…a long journey. And no one know the road from onset through remission better than the PRP community. We were the experts
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Editor’s Note: Christine Günther is a PRP parent. Her daughter Molly was diagnosed with juvenile onset PRP in the fall of 2013 . At the time, we were both members of the PRP Support Group and traded a few emails.Christine was overwhelmed by PRP and receptive to any advice that would help her cope with this
PRP Parenting Challenges: Open Letter Read More »
Like many Americans, you may take dietary supplements in an effort to stay healthy. With so many dietary supplements available and so many claims made about their health benefits, how can you decide whether a supplement is safe or useful? This fact sheet provides a general overview of dietary supplements, discusses safety considerations, and suggests
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The PRP Survival Guide is 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. We need to harvest that knowledge for those in need of enlightenment.Share what you have learned about PRP as a patient or caregiver. Share what
How to deal with rude people Read More »