Living with Porphyria cutanea tarda
A form of porphyria that mainly affects the skin, causing painful blisters on sun-exposed areas like the hands and face.
Understanding Porphyria cutanea tarda
People are sensitive to the sun and get painful blisters on sun-exposed skin such as the hands and face. Skin there may be fragile and blister or peel after minor injury. Hair growth can increase and the skin can darken and thicken. Liver problems can occur, and PCT is linked to a higher risk of liver scarring (cirrhosis) and liver cancer. It usually appears in adulthood.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Painful blisters on sun-exposed skin
- Sensitivity to sunlight
- Fragile skin
- Slow wound healing
- Long-term liver inflammation
- Pain
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 digestive system specialists, genetic specialists, kidney specialists and skin, hair, and nail specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
American Porphyria Foundation and United Porphyrias Association may keep lists of experts for this condition.
Care & treatment
- Care team
- Digestive system specialists (gastroenterologists); Genetic specialists (geneticists); Kidney specialists (nephrologists); Skin, hair, and nail specialists (dermatologists)
- Expert care
- Expert lists: American Porphyria Foundation, United Porphyrias Association
- 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 American Porphyria Foundation and other patient organizations
- 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 PCT has several causes working together, such as multiple genes plus factors like excess iron, alcohol, estrogens, smoking, chronic hepatitis C, HIV and HFE gene changes. Less commonly it runs in families through changes in the UROD gene (autosomal dominant).
Also known as: chp - cutaneous hepatic porphyria; cutaneous hepatic porphyria; pct; pct - porphyria cutanea tarda; porphyria cutanea tarda symptomatica; porphyria, hepatocutaneous type
Patient organizations
- American Porphyria FoundationPorphyria cutanea tarda · United States
- United Porphyrias AssociationPorphyria cutanea tarda · United States
- National Kidney FoundationKidney diseases · United States
- Renal Support NetworkKidney diseases · United States
- Children's Skin Disease FoundationSkin diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Porphyria cutanea tarda.
Explore research for Porphyria cutanea tarda
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