Pityriasis Rubra Pilaris (PRP) Community

Learn how others live with Pityriasis Rubra Pilaris (PRP) and share your story

LIFE OF A PRP CARER

by taniagray published 18 days ago

How life has affected all those that love a PRP patient. I hear to often the words "you dont have the disease therefore you dont understand" those words are true, however it does affect the carer in other ways, all are just as important.

So our story...in 2012 my partner Jules was diagnosed with Fuchs Dystrophy, an eye condition which leads to impaired vision, my role as a carer ...

PRP AWARENESS MONTH 2016

by christinegnther published about 1 month ago

Die Teilnahme an den Challenges ist immer noch möglich! Guten Morgen alle zusammen

In der Schweiz ist vor ein paar Stunden der 1. Dezember angebrochen. Das bedeutet, dass der PRP Awareness Monat 2016 beendet ist.

Falls ihr aber wie ich völlig vergessen haben solltet, bei der «Drug Efficacy Survey Challenge», der Medikamentenwirksamkeits-Challenge, mitzumachen, so könnt ihr das immer noch...

HOW TWO WEE PRPERS HAVE WRITTEN PRP HISTORY TODAY!

by christinegnther published about 1 month ago

Today was a very special day for Nils and Molly. For the first time they have met another child with PRP in flesh and blood!

Both are treated at the Children's Hospital in Zurich. Let's call it destiny - they had been accidentally invited to an appointment - at the same time - at the same place by the same dermatology team!

Finally, these two unicorns - or supermen like Nils pr...

PRP AWARENESS MONTH 2016

by PRP Alliance published 2 months ago

PRP AWARENESS MONTH 2016 officially began at 12:00 midnight (New Zealand Standard Time (NZST) on November 1, 2016 with a post to the 715 members of the PRP Facebook Support Group. The goal for this annual event is to advocate the timely DIAGNOSIS of pityriasis rubra pilaris, the identification of successful TREATMENT options and an increase in PRP-specific RESEARCH. For more information abou...

MY PRP

by Rodrigo-Berra published 2 months ago

PRP appeared when I was 8 years old, but the correct diagnosis stating that I had PRP was done only when I was 13 through a biopsy. Today I'm 35.
In my case, PRP dont itch, dont burn, dont hurt and hardly takes the whole body, usually it is present in the arms and legs. On the face and hair it appears difficult. I have some spots on the eyelids and nose. In the ears I usually have too, bu...

PRP AWARENESS DAY 2016

by BillMcCue published 3 months ago

As a member of the PRP Facebook Support Group I was greeted this morning with a post and photo from Christine Günther, my friend and a co-moderator for the PRP Community in RareConnect. Her Message:

"HAPPY PRP-DAY!

Let's continue to work on awareness so that PRPers with juvenile onset get the best (mostly lifetime) treatment they deserve and can grow up happily while playin...

MOLLY’S PRP-AWARENESS-GIFT BAG

by christinegnther published 3 months ago

MOLLY’S COMMITMENT AS A YOUNG PRP-ADVOCATE AND HER PARTICIPATION IN TWO CHALLENGES OF THE PRP-AWARENESS-MONTH. Molly and us, her parents, used the PRP-Awareness-Month 2016 as an opportunity to present all those people who help Molly in her fight against PRP with a little gift bag.
The bag includes: a PRP-Ribbon, a copy of the hand-out for PRP patients and their families, a personal thank-you-...

MISSED DIAGNONSIS UNTIL COVERED

by assasinator published 3 months ago

disease mimics other conditions january of 2016 i had phototherapy for skin precancers. a few days after the treatment on my face my face, arms, and legs broke out in a red spotty rash that itched. it started on my upper torso and moved to cover to my hands and belly within a week. the classic islands of sparing were all over at that time. my dermatologist said it looked like a allergic reactio...