Living with Hereditary hemochromatosis
An inherited condition in which the body absorbs too much iron, which can build up in organs.
Understanding Hereditary hemochromatosis
Extra iron is stored in the skin, heart, liver, pancreas, and joints and can damage them over time. Early symptoms can include tiredness, joint pain, belly pain, weight loss, and loss of sex drive. Later problems can include arthritis, liver disease, diabetes, heart changes, and skin discoloration. There are four types. Types 1 and 4 begin in adulthood. Type 2 is juvenile-onset.
Signs & symptoms
GARD doesn't list a symptom list for this condition, but the summary describes these early symptoms:
- Extreme tiredness (fatigue)
- Joint pain
- Belly pain
- Weight loss
- Loss of sex drive
- Skin discoloration
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
Your doctor may refer you to a specialist who knows rare conditions.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- A doctor familiar with rare conditions, plus specialists as needed
- 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 the cause is genetic and depends on the type. Diet, alcohol use, and infections can affect how severe symptoms are.
Also known as: diabetes bronze; familial hemochromatosis; hemochromatosis, hereditary; hfe; idiopathic hemochromatosis; iron storage disorder
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 Hereditary hemochromatosis.
Explore research for Hereditary hemochromatosis
Explore actively recruiting Hereditary hemochromatosis studies with HealthSpark.
Find actively recruiting studies for Hereditary hemochromatosis with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
- Share your city to look for research near you
- 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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