Living with African nutritional hemochromatosis
A condition where the body absorbs too much iron from the diet, which builds up in the liver, bone marrow, and spleen.
Understanding African nutritional hemochromatosis
The extra iron is stored in tissues and organs, mainly the liver, bone marrow, and spleen. Over time, it can damage them. Iron in the liver can lead to long-term liver disease (cirrhosis). Iron in immune cells may affect their ability to fight infections. GARD lists the onset as adulthood and older adulthood.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Scarring of the liver (hepatic fibrosis)
- Liver inflammation (hepatitis)
- Damage to liver cells near blood vessels
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 and genetic specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- Digestive system specialists (gastroenterologists); Genetic specialists (geneticists)
- 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 rare disease patient organizations for support
- 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
GARD says it results from a diet high in iron, especially a traditional African beer brewed in iron drums. Some evidence suggests a genetic tendency to absorb too much iron may also be involved.
Also known as: african iron overload; bantu siderosis; iron overload in africa
Patient organizations
Rare-disease groups that can help
- 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 African nutritional hemochromatosis.
Explore research for African nutritional hemochromatosis
Explore actively recruiting African nutritional hemochromatosis studies with HealthSpark.
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- Recruiting studies from ClinicalTrials.gov
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- Eligibility is confirmed by the study team
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