Overview
Sporadic porphyria cutanea tarda (also called sporadic PCT or Type I PCT) is the most common type of porphyria, a group of disorders that affect how the body makes heme — an important part of red blood cells. In sporadic PCT, the liver does not produce enough of an enzyme called uroporphyrinogen decarboxylase (UROD). This causes harmful substances called porphyrins to build up in the body, especially in the skin and liver. Unlike the inherited form of PCT, the sporadic type is not passed down through families — it develops during a person's lifetime, usually triggered by certain environmental or lifestyle factors. The most noticeable symptoms affect the skin. People with sporadic PCT often develop blisters, fragile skin, and scarring on areas exposed to sunlight, especially the hands, forearms, and face. The skin may also darken or grow extra hair in affected areas. These skin changes can be uncomfortable and distressing. The liver is also commonly affected, and many people have some degree of liver inflammation. The good news is that sporadic PCT is very treatable. The main goals are to find and remove the triggers causing the disease — such as alcohol, iron overload, estrogen, or hepatitis C infection — and to lower porphyrin levels in the body. Two main treatments are used: regular removal of blood (phlebotomy) and a medication called hydroxychloroquine. Most people respond well to treatment and can achieve remission, meaning their symptoms go away or greatly improve.
Also known as:
Key symptoms:
Blisters on sun-exposed skin, especially the hands and forearmsFragile, easily damaged skin that tears or blisters with minor bumpsDarkening or discoloration of the skinIncreased hair growth on the face and other areas (hypertrichosis)Scarring and thickening of the skin over timeSkin that heals slowly after injuryItching or burning of the skinReddish or brownish urine (from porphyrins being excreted)Liver inflammation or abnormal liver blood testsSensitivity to sunlightMilia — small white cysts on the skinFatigue related to liver involvement or anemia
Sporadic
Usually appears on its own, not inherited from a parent
Adult
Begins in adulthood (age 18 or older)
Treatments
No FDA-approved treatments are currently listed for Sporadic porphyria cutanea tarda.
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Specialists
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Treatment Centers
8 centersBaylor College of Medicine Rare Disease Center ↗
Baylor College of Medicine
📍 Houston, TX
🏥 NORDStanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
🔬 UDNUCLA UDN Clinical Site ↗
UCLA Health
📍 Los Angeles, CA
🔬 UDNBaylor College of Medicine UDN Clinical Site ↗
Baylor College of Medicine
📍 Houston, TX
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🏥 NORDMayo Clinic Center for Individualized Medicine ↗
Mayo Clinic
📍 Rochester, MN
👤 Mayo Clinic Center for Individualized Medicine
🏥 NORDUCLA Rare Disease Day Program ↗
UCLA Health
📍 Los Angeles, CA
Travel Grants
No travel grants are currently matched to Sporadic porphyria cutanea tarda.
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Caregiver Resources
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Family & Caregiver Grants
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Social Security Disability
Learn how rare disease patients may qualify for SSDI/SSI benefits.
Questions for your doctor
Bring these to your next appointment
- Q1.What triggered my PCT, and how do I find out if I have hepatitis C, iron overload, or other contributing factors?,Should I have genetic testing to confirm I have the sporadic form rather than the inherited form of PCT?,Which treatment is right for me — phlebotomy, hydroxychloroquine, or both — and how long will I need it?,How will I know when I am in remission, and what monitoring do I need long-term?,What sun protection measures do I actually need to take every day?,Are there any medications, supplements, or foods I should avoid to prevent a flare?,What are the signs that my liver is being affected, and when should I see a liver specialist?
Common questions about Sporadic porphyria cutanea tarda
What is Sporadic porphyria cutanea tarda?
Sporadic porphyria cutanea tarda (also called sporadic PCT or Type I PCT) is the most common type of porphyria, a group of disorders that affect how the body makes heme — an important part of red blood cells. In sporadic PCT, the liver does not produce enough of an enzyme called uroporphyrinogen decarboxylase (UROD). This causes harmful substances called porphyrins to build up in the body, especially in the skin and liver. Unlike the inherited form of PCT, the sporadic type is not passed down through families — it develops during a person's lifetime, usually triggered by certain environmental
How is Sporadic porphyria cutanea tarda inherited?
Sporadic porphyria cutanea tarda follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Sporadic porphyria cutanea tarda typically begin?
Typical onset of Sporadic porphyria cutanea tarda is adult. Age of onset can vary across affected individuals.