Quick summary - haemochromatosis
- Haemochromatosis is a common condition in the UK.
- In haemochromatosis iron can build up in the body. This can damage the liver and other organs.
- Haemochromatosis and iron overload are diagnosed with blood tests.
- There are 3 main types of haemochromatosis – (adult) haemochromatosis, juvenile haemochromatosis and neonatal haemochromatosis.
- Some people with the genes for adult haemochromatosis never develop iron overload and do not need treatment.
- Common symptoms include joint pain and fatigue. It can be possible to avoid other symptoms with treatment.
- The sooner iron overload is diagnosed and treated, the lower the risk of any organ damage.
- With treatment as needed, people with haemochromatosis have a normal life expectancy.
What is haemochromatosis?
- About iron in the body
- How haemochromatosis affects iron in the body
How is haemochromatosis passed on in families?
- How is haemochromatosis passed on in families?
- Types of haemochromatosis
- Gene variants and risk
The risk of iron overload in haemochromatosis
- Gene penetrance
- If I have the gene variants what are the chances I’ll have iron overload?
Symptoms and diagnosis of adult haemochromatosis
Tests and diagnosis
- How haemochromatosis is inherited
- Having a test – or not
- What would happen if I am found to have inherited haemochromatosis gene variants?
- Blood tests for haemochromatosis
- Further tests for haemochromatosis
Treatment for adult haemochromatosis
Treatment for adult haemochromatosis
- Removing excess iron (venesection)
- Alternatives to venesection
Living with adult haemochromatosis
Complications and related conditions
- Liver damage
- Joint problems (arthritis)
- Bone thinning (osteoporosis)
- Diabetes
- Heart problems
- Other hormonal changes
Living with haemochromatosis
- Being diagnosed with a genetic condition
- Diet
- Alcohol
- Coping with fatigue
- Joint pain
- Talking about having a genetic condition
Haemochromatosis in babies, children and young adults
Neonatal haemochromatosis is caused by the mother’s immune system attacking the baby’s liver. It is usually diagnosed before or just after birth.
Juvenile haemochromatosis is an inherited condition, it is usually diagnosed in teenagers or young adults. It is not the same as adult haemochromatosis. It is linked to different genes and is usually more serious.
Neonatal Haemochromatosis (babies)
- What is neonatal haemochromatosis?
- What causes neonatal haemochromatosis?
- What are the signs and symptoms of GALD-NH?
- How is GLAD-NH diagnosed?
- How is GLAD-NH treated?
- Where can I get further help or support?
Juvenile haemochromatosis (teenagers and young adults)
- Symptoms
- Treatment
- Complications
- living with juvenile haemochromatosis
How we make our information
Our information aims to be clear, up-to-date, and useful. We work with people living with liver disease and clinicians to make our information.
The main sources for this information are:
- EASL Clinical Practice Guidelines on haemochromatosis 2022
- Juvenile Hemochromatosis Alberto Piperno, MD, Francesca Bertola, PhD, and Angela Bentivegna, PhD, 2020
- Evidence review: Maternal intravenous immunoglobulin for the prevention of alloimmune neonatal haemochromatosis for women who have had a previous foetus diagnosed with neonatal haemochromatosis NHS England, 2019
- Diseases of the liver and biliary system in children Edited by Prof. Deirdre Kelly, Wiley-Blackwell, 4th edition (2017) , Chapter 10: Neonatal hemochromatosis
If you have any feedback or would like a full list of references, please let us know by emailing patient-info@britishlivertrust.org.uk.
Everyone’s experience of haemochromatosis will be different. Always talk to your specialist medical team for personal advice.
Special thanks:
We would like to thank all the patients and families who helped to create this information.
Thank you to our clinical reviewers:
- Jeremy Shearman, Consultant Hepatologist and Gastroenterologist, South Warwickshire University Foundation Trust
- Sister Kim Hicks, Medical Day Unit Haemochromatosis Nurse, Royal Cornwall Hospital, Treliske
- Dr Indra van Mourik, Consultant Paediatric Hepatologist (retired)
Publication date: September 2025
Next review: September 2028

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