7-PRP Advocacy

  Editor’s Note — The Aplastic Anemia & MDS International Foundation developed Standing Up for Your Health: Self Advocacy for Patients with Rare Diseases.a self-advocacy brochure that is worthy of note. It is unlikely that rank and file PRP patients and caregivers will go cover-to-cover and digest every jot and tittle. With that in mind, the following represents the equivalent of CLIFF […]

The 5-D itch scale: a new measure of pruritus Authors: S. Elman, L.S. Hynan, V. Gabriel, and M.J. Mayo  Source: U.S. National Library of Medicine Background Itching is a subjective and multidimensional experience which is difficult to quantify. Most methodologies to assess itching suffer from being unidimensional, for example only measuring intensity without impact on quality of life,

Finley, A.Y. Abstract on the Dermatology Life Quality Index (DLQI) Statement #1 – The Dermatology Life Quality Index (DLQI) is a simple practical questionnaire technique for routine clinical use. Comment: Some might say that the DLQI is “too simple ” and that the challenges of treating PRP should not be considered  “routine clinical use”. Statement

How the Psoriasis Area and Severity Index Works Author: Dennis Thompson Jr. Medically Reviewed by Pat F. Bass III, MD, MPH. Last Updated: April 5, 2012 Source: EverydayHealth.com The Psoriasis Area and Severity Index (PASI) helps in diagnosing psoriasis and judging whether a patient’s condition is improving. The Psoriasis Area and Severity Index (PASI) is an assessment

Howling Hands When the PRP community howls at the moon, we are often thinking  about hands. Howling Hands is the Index Page for other topics related to hands, e,.g., fingers, fingernails, palms, gloves, dexterity, appearance, itch relief, etc. DEXTERITY GLOVES FINGERNAILS On June 26, 2018 Beth R from Bristol, England posted the following: “I still

In 2018, Dr. Teri Greiling, a dermatologist at Oregon Health and Science University, embarked on a research project to investigate the clinical response and safety of ixekizumab (brand name Taltz®) in treating for moderate to severe pityriasis rubra pilaris. The research was described as a single-arm, investigator-initiated trial conducted in adult patients with moderate to

   From the Editor… If you would like to submit a “Statement of HOPE” for inclusion in the PRP Survival Guide, please use “Leave a Reply” at the end of this webpage. Alan B, LakeLAND, Florida, USA Snippet of Hope I was scared when my PRP journey began. Why me? How long will this journey last. I

How much do you really know about pityriasis rubra pilaris? What if you had the opportunity to test your knowledge against the infamous JEOPARDY! game board with it’s six categories, each category with five questions valued at $100, $200, $300, $400 and $500 respectively. How many of the 36 questions could you answer correctly? History for $100…