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 […]
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 affordable drugs. The
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 that a patient advocate is
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 with
PRP Parenting Challenges: Open Letter Read More »