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What is Haemochromatosis?
Haemochromatosis is a genetic or inherited condition where the body absorbs and retains too much iron. The build-up of excess iron, known as iron overload, can damage many parts of the body, including the liver, joints, pancreas and heart.
What are the common symptoms of haemochromatosis
Early symptoms of haemochromatosis include:
- fatigue
- weight loss
- joint pain
- irregular periods
- erectile dysfunction
- brain fog, mood swings, depression and anxiety
If left untreated, further symptoms can develop, including:
- loss of sex drive (libido)
- darkening of the skin, if you are white
- abdominal pain and swelling
- yellowing of the skin (which may be less noticeable on brown or black skin) and the white parts of the eyes (jaundice)
- feeling thirsty all the time and needing to urinate more frequently
- severe pain and stiffness in your joints, particularly in the fingers
- chest pain
- shortness of breath
- swelling of your hands and feet
- an irregular heartbeat (arrhythmia)
- shrinking of the testicles
How is haemochromatosis diagnosed?
Haemochromatosis can be diagnosed with blood tests. If confirmed, you may need further tests, such as an ultrasound or MRI, to determine whether the condition has caused any damage, for example, to your joints or organs. Genetic testing may also be appropriate.
How is haemochromatosis treated?
While there is currently no cure for the condition, there are treatments available to reduce iron levels in the body, thereby lowering the risk of damage. The main and by far the most common treatment is venesection (phlebotomy), a procedure to remove blood – in fact much like donating blood. This may need to be performed as often as weekly at first, then reduced as iron levels fall.
Chelation therapy is sometimes offered as an alternative if venesection is not a viable option; this involves taking medication to reduce the amount of iron in the body.
You can learn more about how haemochromatosis is diagnosed and treated in your country by connecting with our member organisations.
Useful links and resources
Therapeutic Guidelines
Published by Haemochromatosis International in 2018, these guidelines provide practical, consensus-based recommendations for managing genetic haemochromatosis. They are available to download in several languages at the links below
Browse our full range of video guides and resources.
The European Iron Club
The European Iron Club (EIC) is a cross-disciplinary scientific society dedicated to advancing research, collaboration, and education in iron biology. Founded in London in 1968, it brings together students, researchers, clinicians, and healthcare professionals to further understanding of iron in health and disease.
To learn more or become a member, visit The European Iron Club.
International BioIron Society.
The International BioIron Societyy (BIOIRON) is a global scientific society dedicated to advancing knowledge of iron’s biological and medical roles, with a particular focus on disorders of iron deprivation and excess such as haemochromatosis.
To learn more or become a member, visit the BioIron website.