As a global community with over 2,100 PRP patients, my concern is that information about COVID-19 — as it specifically relates to pityriasis rubra pilaris — will find its way on the PRP Facebook Support Group webpage as a post, comment or reply only to be lost or buried.
To date, we have had only ONE report of any PRP patient — any where in the world — diagnosed with COVID 19. IMHO — the real issue is this: How many PRP patients taking immunosuppressants and/or biologicals had to discontinue or postpone their treatment? THAT could be a BIG number as a percentage of the global PRP patient population.
We want to harvest and make available accurate, patient-friendly information about COVID-19, as it relates to the daily challenges of body, mind and spirit faced by PRP patients.
I hope that this section of the PRP Survival Guide will serve as a clearinghouse for information about COVID-19 based on the needs of the global PRP community.
Please note that the “Leave a Reply” feature at the end of this webpage page will enable you to ask PRP-specific questions about COVID-19. If you have a PRP-related question about COVID-19, give me a crack at it.
Covid-19 Clearinghouse for PRP
There is a great deal of information about COVID-19 online. A person can spend days reading information that quickly becomes redundant. I know. I did. Hopefully the information satisfies a PRP patient’s or PRP caregiver’s “want to know”.
❋ What to do NOW A MUST READ!
Latest Updates from CDC.gov
From time to time the Centers for Disease Control and Protection will update information. The following links are for those with above average curiosity.
Heard out & about in the Land of Chat
PRP-specific information about COVID-19 shared in the PRP Facebook Support Group will find its way to this section.
✔︎ St.Jude Researchers make discovery — Lisa S, Sebewaning, Michigan
✔︎ Ichthyosis and COVID-19 — Jan T, Ringwood, New Jersey
✔︎ PRP, COVID-19 and toilet paper — Lisa S, Sebewaning, Michigan
✔︎ COVID-19 — Why we should all wear masks Lise Duedahl, Denmark
Ginny M., Lexington, South Carolina
Bill R., Scranton, Pennsylvania
I may have missed any references to this in prior posts, but how is everyone handling all the hand washing and hand sanitizer use during this awful pandemic. I believe that it may have reignited the PRP on my hands. Cotton gloves and Clobetasol® have been my go-to remedy, but I don’t like the possibility of contaminating them in a public area. Nitrile gloves make my hands hot and greasy. Any words of wisdom?
Carol T, Swaffham, Norfolk, England, UK
I have developed a coping strategy of my own………I have a bird feeder in my garden (which is visible from my lounge) which now attracts blue tits, blackbirds, sparrows and the resident robins that live in the hedge. Doves and pidgeons use the tree as their perching place and have their own feeding stations. Two baby pigeons have hatched in their nest in the branches and due to mum and dad’s attentiveness will soon be ready to fly. A squirrel visits daily for his crushed peanuts and now has his own feeder. The hedgehog visits every evening to feed in his own little house. Taking care of my wildlife family is so fulfilling and exciting and completely takes my mind off me. Watching them is timeless