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. […]
Observations from the Land of Red & Shed Read More »
From the Editor… I was lucky. My wife has GREAT insurance. My copays were low and acitretin, triamcinolone, Desonide, Clobetasol, urea lotion, and hydroxyzine and worked. I was “active” with PRP for only 20 months (8/2012 to 04/2014). For too many PRP patients and their caregivers, the cost of healthcare can dramatically limit access to
Cost of Healthcare — Horror Stories Read More »
Editor’s Note: The following information about the role of patient advocates was recently “harvested” from the National Patient Safety Foundation, Boston, MA. The PDF seemed to reflect the needs of PRP patients worldwide. The PRP Survival Guide uses the term “caregiver” while folks in the UK and elsewhere use the term “carer”. I would submit
What is a patient advocate? Read More »
Editor’s Note: For many PRP patients and caregivers, the importance of “Liver Numbers” cannot be overstated. The following information was harvested from three credible websites. Please feel free to add your experiences and insights on this topic. Use “Leave a Reply” at the end of this webpage. From MedicineNet.com AST (SGOT) and ALT (SGPT) are
Testing Your Liver — Food for Thought Read More »
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
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
Using Dietary Supplements Wisely Read More »
Under Revision The word advocacy has been around for quite some time. ❏½ Middle English and Old French advocacie ❏½ Medieval Latin advocatia ❏½ Classical Latin advocatus From the perspective of a patient diagnosed with pityriasis rubra pilaris, there are six levels of advocacy. But let’s start with a composite definition of advocacy. ❏½ Advocacy
What are the opportunities for PRP advocacy? Read More »
From the Editor 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
How to deal with rude people Read More »
From the Editor 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
From the Editor 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
PRP, Travel and Vacations Read More »