Make the Most of Every Clinic Visit Editor’s Note: I was not a good self-advocate for the first three months after the onset of pityriasis rubra pilaris — before I knew it was PRP. I will be the first to admit that I let my dermatologist “run the show”. My dermatologist diagnosed with seborrheic […]
Self-Advocacy: The Clinic Visit Read More »
We can all agree that the PRP global community is a worthy cause. Please consider becoming a member of the PRP Alliance and a PRP Advocate. There are currently 300 members of the PRP Alliance.Membership requires a donation of at least $25. We have no other source of reveue except for membership dues. Donation Options:
The $20.25 Campaign Read More »
November 1-30, 2022 From the EditorA red dot, the size of a dime, appeared on my forehead on August 8, 2012. It took nearly four months, a six-day hospital stay, the firing of my first dermatologist, and the ordering of a fourth biopsy that specifically instructed the dermatopathologist to consider PRP before I got my
PRP Awareness Month 2022 Read More »
How to join the PRP Support Group on Facebook For those who are seasoned Facebookers, the PRP Support Group on Facebook is relatively easy to find. Step One — Go to: Facebook.com Step Two — Locate: “Search for people, places and things” Step Three — Enter: “Pityriasis Rubra Pilaris (PRP)” Step Four — Click: “Ask
How To Join the PRP Support Group on Facebook Read More »
Back to Square One? Yada yada yada yada yada yada yada yada yada yada yada yada yada yada yada yada yada yada yada yada yada yada yada yada yada yada yada yada yada yada yada yada yada yada yada yada yada The Red Bastard has returned! At first glance it appeared to be a spider bite. However, when it did not improve with medication, my dermatologist performed a biopsy. A more definitive
Burning Mouth Syndrome FROM THE EDITOR… On May 22, 2022, in a post to members of the PRP Support Group, Murray Rose (British Columbia, Canada) raised the issue of Burning Mouth Syndrome as a possible symptom of pityriasis rubra pilaris. The topic first appeared on Murray’s radar during one of four PRP Quality of Life
Burning Mouth Syndrome Read More »
The Phases or Stages of PPR The following information was developed by PRP patients in coordination with healthcare professionals at the direction of the National Organization of Rare Disorders. The 5,000-word NORD PRP Report is the starting point for all PRP patients and their caregivers. The following section focuses on the progression of PRP. Please
Progression of PRP Read More »
PRP and hair-related issues Dr. Albert Einstein was famous for what he accomplished. As time passed, his hair became famous too. For PRP patients, however, hair can be a source of great despair and frustration. Some of us loose our hair and cross our fingers and hope it will return as it was. Some of us
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Protected: PRP Chronicle JK, Ontario, Canada Read More »
The One-Sentence Timeline Editor’s Note: When telling the story of your PRP journey, NEVER begin with “Once upon a time”. Follow in the footsteps of the Bard of the Doghouse… “It was a dark and stormy night”. WHAT IF every PRP patient or caregiver took ONE MINUTE on the first day of every month to
Storytelling — The Timeline Read More »