Why participate in PRP Research?

From the Editor…

During the Summer of 2014, an effort was made to encourage the worldwide PRP community to participate in a PRP research effort under the auspices of the Department of Dermatology and Cutaneous Biology at Thomas Jefferson University. The following members of the PRP Facebook Support Group offered words of encouragement. The effort was successful with 105 PRP patients participating.

Tierney R — Virginia Beach, VA
After over 40 years I continue to be frustrated by PRP research that is either dated, based on too few subjects or written for an audience who have graduated from medical school.  As of May 1, 2014, the Thomas Jefferson University PRP Research Study had less than 50 participants. I would like to see that number doubled or tripled. The more PRPers who complete the questionnaire and authorize TJU researchers to gather our medical information, the better the results will be. [Editor’s note: The number of participants in TJU research did more than double to 105, the largest “cohort” in PRP-related clinical research.]

Will S — Tucson, AZ
I was told over the phone by my dermatologist’s assistant that I had PRP. My response was predictable, “What the hell is that?” She had been instructed by my doctor to tell me to “go online and read about it.” After firing Dr. Google, I found Dr. Paul English in Gilbert, AZ. Since 2009 we have tried methotrexate, Soriatane®, Humira®, topical steroids and more, but nothing worked for my version of PRP. As kind, smart and humane as he is, Dr. English can only shrug his shoulders, empathize with what I am going through and admire my own esoteric attempts to find a cure. Other than Thomas Jefferson University, I know of no real research being done for the PRP community. We always hear that we are too small a group to attract research dollars. There’s no reason we can’t muster 200 PRPers to participate by June 30th. TJU will get a better sampling and other potential researchers may take notice.

Barbara K — Waterford, CT
We are in this together. Will you ever forget being told “you have pityriasis rubra pilaris?”  I know I won’t. My first reaction was, to ask, “What is it?” I had never heard of it. Even my dermatologist had only heard about it in text books.  My primary care physician, ENT and opthamologist had never heard of it.  To say I felt alone is an understatement.

My second reaction was feeling alone. Was there anyone else out there who has PRP? Like many, I found the PRP Support Group and realized there were others just like me.  What a relief to learn that I wasn’t a freak.  There were actually people out there who were suffering just like me.

We walk the same path.  When I shared my experiences with PRP with others, I felt a sense of belonging and comfort. Working together as the PRP community not only serves ourselves, but the many who will follow us.  And, we just might be able to help someone else.  Participating in PRP-related medical research is a wonderful commitment.

Susan R — Columbus, OH
I can’t imagine not participating in the TJU study. I have nothing to lose and everything to gain by doing so.  Think of the progress made in cancer research in our lifetimes. Imagine what it would be like if patients had been reluctant to participate years ago? Would we have seen the progress we’re now seeing?

Because PRP is such a rare disease, if any progress is to be made we need to help ourselves to find a cure. We need to have every PRPer involved. The PRP community should be grateful that TJU is willing to tackle the research on our ‘orphan disease’ when no one else is willing to do so.

Chris C — Guildford, England
I have always been worried for my nine-year-old daughter. No dermatologist knew the cause, exact treatment or cure of PRP.  I’ve heard of a small DNA research project in Israel, but had resigned myself to the fact that PRP is too rare for any pharmaceutical company to consider investing in research.  With a prevalence rate of one in 400,000 there are only an estimated 133 in England. I am, therefore, delighted that such a reputable institution as Thomas Jefferson University is conducting serious research. I simply cannot fathom why only 50 or so PRP patients  have agreed to participate. It beggars belief!

Bill M — Plano, TX
On the day I was diagnosed with PRP, I immediately googled pityriasis rubra pilaris. I was not impressed with websites like Healthline, Medscape and WebMd. They didn’t seem to have any depth. Very boilerplate.  Read one and you read them all. However, when I finally reached the PRP Support Group website I found the FAQs to be infinitely more informative. While I appreciated the depth of the FAQs, the fact that they had not been revised since January 2005 was disconcerting. Over the next two years I would learn that the expression “long in the tooth” applies to too much research about PRP.  That’s why am am so excited about the TJU PRP Research Project. For me, it is less about what they are actually doing (which I know will be phenomenal) and much more about the date: 2014. Research is NOW.

F03 — Why participate in PRP Research

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