Living with Familial pityriasis rubra pilaris
A rare genetic skin condition with a salmon-colored scaly rash, bumps around hair follicles, and thick skin on the palms and soles.
Understanding Familial pityriasis rubra pilaris
The rash is salmon-colored with fine scales, in patches over the body with clear skin between. People also get bumps around hair follicles (follicular keratoses). The palms and soles often become thick and hard (palmoplantar keratoderma). Skin problems usually start at birth or in early childhood and last throughout life.
Signs & symptoms
GARD doesn't list a separate symptom list. Its summary describes:
- Salmon-colored scaly rash in patches
- Bumps around hair follicles (follicular keratoses)
- Thick, hard skin on palms and soles
- Skin problems from birth or early childhood
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
Specialists who may be involved include genetic specialists and skin, hair, and nail specialists.
- 3Consider genetic testing
Changes in CARD14 are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.
Care & treatment
- Care team
- Genetic specialists (geneticists); Skin, hair, and nail specialists (dermatologists)
- Expert care
- Ask about multidisciplinary care centers for rare conditions
- 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 Children's Skin Disease Foundation
- 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
Changes in the CARD14 gene cause it.
Also known as: hereditary pityriasis rubra pilaris; prp
Patient organizations
- Children's Skin Disease FoundationSkin diseases · United States
Broader rare-disease groups
- Global GenesRare Diseases · United States
- National Organization for Rare DisordersRare Diseases · United States
- Genetic AllianceRare Diseases · United States
- RARE FoundationRare Diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Familial pityriasis rubra pilaris.
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