Living with Pityriasis rubra pilaris
A group of skin conditions that cause constant inflammation and scaling, with red scaly patches on parts or all of the body.
Understanding Pityriasis rubra pilaris
People have reddish, scaly patches that may cover the whole body or only some areas. Some people also have thickened skin on the palms and soles (palmoplantar keratoderma), nail changes and thinning hair.
Signs & symptoms
GARD doesn't list a full symptom list for this condition. It describes these signs:
- Red, scaly patches
- Constant skin inflammation
- Thickened skin on palms and soles
- Nail changes
- Thinning hair
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Your doctor may refer you to a specialist who knows rare conditions.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Foundation for Ichthyosis and Related Skin Types may keep lists of experts for this condition.
Care & treatment
- Care team
- A doctor familiar with rare conditions, plus specialists as needed
- Expert care
- Expert lists: Foundation for Ichthyosis and Related Skin Types
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with Foundation for Ichthyosis and Related Skin Types
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
In most cases PRP is not inherited and the cause is not known. In some people, especially type V (atypical juvenile type), it is autosomal dominant and may be caused by changes in the CARD14 gene.
Also known as: devergie's disease; lichen ruber acuminatus; pityriasis rubra pilaris--familial type; prp; prp - pityriasis rubra pilaris
Patient organizations
- Foundation for Ichthyosis and Related Skin TypesPityriasis rubra pilaris · United States
You are more than your diagnosis
Perspectives from people navigating life with Pityriasis rubra pilaris.
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