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Living with Hereditary coproporphyria

A rare inherited condition with sudden attacks of belly pain, vomiting, and nerve symptoms.

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Understanding Hereditary coproporphyria

Hereditary coproporphyria (HCP) is a rare inherited liver porphyria, a blood condition that causes sudden attacks of nerve-related symptoms.

Attacks can include stomach pain, nausea, vomiting, weakness, numbness, and pain in the hands and feet. Heart rate and blood pressure may rise. Less often there are seizures, skin lesions, or paralysis. Most people have no symptoms between attacks. It starts in the teen years or adulthood.

Signs & symptoms

Symptoms vary from person to person. GARD lists these among the most common:

  • Belly pain
  • Nausea and vomiting
  • Muscle weakness
  • Pain in the arms and legs
  • Dark urine
  • Skin changes and scarring

Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.

Diagnosis

  1. Talk with your doctor

    Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.

  2. See a specialist

    Specialists who may be involved include brain and nervous system specialists, digestive system specialists, genetic specialists and kidney specialists.

  3. Consider genetic testing

    Changes in CPOX are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.

  4. Connect with expert centers

    American Porphyria Foundation, United Porphyrias Association and The Foundation for Peripheral Neuropathy may keep lists of experts for this condition.

Care & treatment

Care team
Brain and nervous system specialists (neurologists); Digestive system specialists (gastroenterologists); Genetic specialists (geneticists); Kidney specialists (nephrologists)
Expert care
Expert lists: American Porphyria Foundation, United Porphyrias Association, The Foundation for Peripheral Neuropathy
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
Bring these questions to your next doctor visit
What can trigger an attack, and how can I avoid triggers?
Which blood, urine, or stool tests confirm HCP?
Should relatives have genetic testing for the CPOX gene?

Quick facts

Symptoms usually startTeenager and as an Adult
InheritanceAutosomal Dominant
GenesCPOX

It is caused by changes in the CPOX gene. It is autosomal dominant, so one changed copy of the gene is enough.

GeneticNeurologicalKidneyGastrointestinalSkinInherited Metabolic

Also known as: berger-goldberg syndrome; coproporphyrinogen oxidase deficiency; cpo - coproporphyrinogen oxidase deficiency; cpo deficiency; cpox deficiency; cpro deficiency

Patient organizations

Source: NIH GARD · Hereditary coproporphyriaGARD ID 6619 · GARD page updated September 2026 · Plain-language summary by Know Rare; editorial review pending. General information, not medical advice.

You are more than your diagnosis

Perspectives from people navigating life with Hereditary coproporphyria.

Explore the Hereditary coproporphyria blog
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Explore research for Hereditary coproporphyria

Explore actively recruiting Hereditary coproporphyria studies with HealthSpark.

HealthSpark

Find actively recruiting studies for Hereditary coproporphyria with HealthSpark. Share your city to explore research near you.

  • Recruiting studies from ClinicalTrials.gov
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  • Eligibility is confirmed by the study team

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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.

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