Haemochromatosis 

Haemochromatosis is an inherited disorder in which iron levels in the body slowly build up over many years.

The excess levels of iron can then trigger symptoms such as:

• feeling very tired all the time (fatigue)
• joint pain
• in men – inability to get or maintain an erection (erectile dysfunction)
• in women – absent periods

Read more about symptoms of haemochromatosis.

What causes haemochromatosis?

Haemochromatosis is caused by an inherited faulty gene that allows a person to absorb excess amounts of iron from food. Normally, the body absorbs as much as it needs.  

Over time people with haemochromatosis absorb and accumulate too much iron in their body, which has a harmful effect on many of its processes.

Read more about the causes of haemochromatosis.

Complications

If haemochromatosis is left untreated, the extra iron is deposited in the body, usually around organs, such as the heart and liver.

This can lead to potentially serious complications such as:

• liver diseases – including scarring of the liver (cirrhosis) or liver cancer
• heart failure – where the heart is unable to pump enough blood around the body

Read more about complications of haemochromatosis.

Treatment

Haemochromatosis responds well to treatment.

Treatment aims to remove excess iron from the body. A type of treatment known as phlebotomy is usually used.

During a phlebotomy a small amount of blood is removed in a process similar to a blood donation. Removing blood from the body on a regular basis will lead to a corresponding drop in iron levels.

For people unable to use phlebotomy for medical reasons, a medication called deferasirox can be used as an alternative. 

Read more about treating haemochromatosis.

Screening

Routine screening for haemochromatosis is not offered by the NHS because it is a relatively uncommon condition.

However, if a close family member (a parent, brother or sister) is diagnosed with haemochromatosis you may want to consider getting tested for the condition yourself. Initial screening is done by blood test.

Read more about diagnosing haemochromatosis.

Living with haemochromatosis

Most people will be able to keep their haemochromatosis symptoms under control, but there are steps that can be taken to keep iron levels low and prevent complications.

These include:

• reducing consumption of red meat
• limiting the consumption of alcohol – as well as containing iron, alcohol can damage the liver, which could be dangerous in people with pre-existing liver disease

Read more about living with haemochromatosis.

Who is affected

Haemochromatosis is uncommon in general terms, although it is one of the most common genetic (inherited) conditions in England.

As many as one person in 200 may be affected.

Symptoms usually start around the age of 40 in men and after the age of 50 in women. Symptoms in women are delayed because their iron levels are reduced when they have a period.

Haemochromatosis is most common in people of white European ethnic background – particularly people of Irish descent.