Pityriasis Rubra Pilaris is a group of rare skin disorders characterized by reddish orange patches on the skin and severe flaking.
hi, I WAS USING CREAMS AND OITMENTS, WORKED OK BUT HAD SUCH LARGE AREAS TO COVER DRS THOUGHT I MIGHT BE GETTING TOO MUCH STEROIDS IN MY SYSTEM I AM NO LONGER ON THEM MY DRS HAVE ME ON HUMERA I INJECT IT TWICE A MONTH, BEEN ON IT FOR 2 MONTHS SOME CHANGE WILL LET YALL KNOW IF THERE ARE ANYMORE CHANGES IN THE NEXT COUPLE OF MONTHS DO YALL HAVE SKIN THAT YOU CAN ACTUALLY GET SAND LIKE PARTICLES TO COME OFF THE AFFECTED AREAS??? ITS SCARY!!!!! HOPE YALL ARE BETTER---
I have had the disease since i was about three years old, it has dominated my teenage and adult life becoming much more severe as i have aged. I am desperate to find a cure, some people find methotrexate or asecretin works well for them but i personally have had horrible experiences with these drugs methotrexate particularly. Sunshine works well for me but living in Britain means that recovery in the summer is minimal and artificial light seems rather ineffective in comparison. I believe I am quite possibly the most covered of all people with this disease as i am yet to see anyone with such a large body coverage. (face, neck, stomach, back, arms, legs) i would say over 60 percent of my body is covered, any help or advice would be greatly appreciated and best of luck to those of you suffering from this painful debilitating disease. Never let it get the best of you, the depression and anxiety i have experienced over the past 5 years i would not wish on anyone, never underestimate the help and support family and friends provide, my struggle is far from over but it is good to know i am not alone and hope that one day i can help others deal with this and similar conditions
hi, have you tired anything that has helped??? I am waiting for my results but dr seems I have this and it is unreal----I hope we both can get help through someone that has had this for awhile-----
CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.
Enrolling is easy.
After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.
Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.
Visit sanfordresearch.org/CoRDS to enroll.
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