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 […]
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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
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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
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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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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
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Lorem ipsum dolor sit amet, consectetur adipiscing elit. Ut elit tellus, luctus nec ullamcorper mattis, pulvinar dapibus leo. Dear 一, I hope you find this letter informational and helpful in caring for our daughter while she is at school. Isabelle has a rare skin disorder called Pityriasis(pit-uh-rie-uh-sis) Rubra Pilaris, more commonly known as PRP to
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Lorem ipsum dolor sit amet, consectetur adipiscing elit. Ut elit tellus, luctus nec ullamcorper mattis, pulvinar dapibus leo. On the Road, Special Issue, July 1, 2014July 1, 2014 Molly and her Mum Molly and her MumJuly 1, 2014 Molly and her Mum Â
It’s time to make history again The PRP global community made history earlier this year. The experiences of over 630 PRP patients have been harvested through a 12-question survey focused on the period from onset of PRP symptoms to the official diagnosis of pityriasis rubra pilaris. The Onset to Diagnosis Survey looks back on your own PRP journey —
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