What is the value of testimonials, snapshots and blogs?
04.60.00 testimonials, snapshots and blogs
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How common a symptom is the inability to sweat?
04.58.02 How common a symptom is the inability to sweat EDITOR’S NOTE: The following thread was initiated by Hailey S on July 5, 2015 as she worried about her inability to sweat and whether it would cause her to overheat. In addition to the 16 participants in this thread, the comments of an additional 17
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What are the issues related to sweating and thermoregulation?
04.58.00 sweating and thermoregulation 04.58.03 SWEATING? You may suddenly notice that you are not perspiring anymore, even in hot weather! This is a symptom that many PRPers experience, and the cause is not certain but is probably tied into the fact that you are already losing much of your body’s moisture because of the shedding
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What do I need to know about UV light therapy?
Editor’s Note: The efficacy of UV light therapy as a treatment option for pityriasis rubra pilaris seems to favor the young, This post is offered to jumpstart a discussion within the PRP community. We start with information published by the National Psoriasis Foundation. Phototherapy Phototherapy or light therapy, involves exposing the skin to ultraviolet light
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Trigger versus Cause: Even the debate can cause stress
From the Editor… The following article was written by Candace Cooper, a PRP Patient Advocate from Fort Smith, Arkansas, and published in the August 2015 of the PRP community newsletter, On the Road…Our Journey from Onset to Remission. by Candace Cooper, PRP Patient Advocate “While everyone can’t agree on a definition of stress, all
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What are the issues related to shedding, flaking and peeling skin
04.54.00 shedding, flaking and peeling 04.54 Flaking skin https://www.facebook.com/groups/15865278115/permalink/10155168294878116/ Jan Tennant April 28 at 2:44pm I am not kidding when I say that skin flakes do not obey the laws of standard physics. They are quantum particles that randomly wink in and out of existence, especially wherever I’ve just swept or vacuumed. They also have
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A kindred spirit, a celebrity, walks in our shoes
04.53.00 A kindred spirit, a celebrity, walks in our shoes EDITOR’S NOTE: When 7.5 million people in America suffer from psoriasis, it’s only a matter of time before a celebrity is diagnosed with this skin disorder. But how long does it take for a celebrity to step forward with the courage to share his/her journey
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What resources are available to PRP patients and their caregivers?
04.51.02 What resources are available to PRP patients and their caregivers? PRP (Pityriasis Rubra Pilaris) Answers In April 1, 2014, the PRP Survival Guide was officially launched. The objective was to provide a repository of easy-to-access information specifically related to the onset, diagnosis, treatment, remission and/or maintenance of pityriasis rubra pilaris. The PRP Survival Guide
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Testimonials on RareConnect
04.49.03 Testimonials on RareConnect Christine Günther shared a link. March 28, 2017 Hi to all, I am so happy that many new members have found their way to this marvellous group! Like you might know, I am the mother of a 7-year-old happy little PRPer who has dealt with her PRP for more than 3.5
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