From the Editor…
Have you heard the parable from India about the six blind men who encountered an elephant. Each blind man touched a different part of the animal and reported:
✽ Leg: “It’s like a pillar”
✽ Tail: “It’s like a rope”
✽ Trunk: “It’s like a thick tree branch”
✽ Ear: “It’s like a big hand fan”
✽ Belly: “It’s like a huge wall”
✽ Tusk: “It’s like a solid pipe”
The term “PRP Advocate” can mean different things to different people. It is all a matter of perspective.
✽ PRP Diagnosis Advocate
It took nearly four months and five biopsies for my second dermatologist to render an official diagnosis of pityriasis rubra pilaris. That experience inspired me to learn more about dermatopathology. I have attended three American Academy of Dermatology annual meeting (Denver, San Francisco and Orlando). At each gathering I have visited with companies that provide diagnostic services to dermatologists. I want to know more.
✽ PRP Treatment Advocate
There are two PRP patients, in particular, who have rallied around the treatment of PRP. Ginny Maxwell (Lexington, SC) has had atypical juvenile onset PRP for over four decades, She has a wealth of experience that includes three PRP children: Joey and Nathan (twins) and Lauren. Glen Misek (Glenview, IL) is a vocal advocate of biologicals.
✽ PRP Parent Advocate
Christine Günther (Zürich, Switzerland) is the mother of Molly who was diagnosed with juvenile onset PRP in the fall of 2013. As the co-moderator of the PRP Community on RareConnect and a frequent responder on the PRP Facebook Support Group site, she is tireless in her efforts to help fellow parents.
✽ PRP Legislative Advocate
Will Sivilli (Tucson, AZ) and Ginny Maxwell (Lexington, SC) have both represented the PRP community, PRP Alliance and the Coalition of Skin Diseases on Capitol Hill. Lobbying efforts are coordinated by the American Academy of Dermatology Association, the political arm of the nonprofit American Academy of Dermatology
✽ PRP Research Advocate.
Dr. Jouni Uitto and Dr. Nick Ross at Thomas Jefferson University are among a group of dedicated researchers conducting ongoing PRP research. Over 120 PRP patients are participating in ongoing clinical research that includes clinical analysis and genetic analysis.
What kind of PRP Advocate do you want to become?
What is a PRP Advocate?