There's currently no cure for haemochromatosis, but there are treatments that can reduce the amount of iron in your body.
This can help relieve some of the symptoms and reduce the risk of damage to organs such as the heart, liver and pancreas.
The most commonly used treatment for haemochromatosis is a procedure to remove some of your blood, known as a phlebotomy or venesection.
The procedure is similar to giving blood. You lie back in a chair and a needle is used to drain a small amount of blood, usually about 500ml, from a vein in your arm.
The removed blood includes red blood cells that contain iron, and your body will use up more iron to replace them, helping to reduce the amount of iron in your body.
There are 2 main stages to treatment:
- induction – blood is removed on a frequent basis (usually weekly) until your iron levels are normal; this can sometimes take up to a year or more
- maintenance – blood is removed less often (usually 2 to 4 times a year) to keep your iron levels under control; this is usually needed for the rest of your life
A treatment called chelation therapy may be used in a small number of cases where regular phlebotomies are not possible because it's difficult to remove blood regularly – for example, if you have very thin or fragile veins.
This involves taking medicine that removes iron from your blood and releases it into your urine or poo.
A commonly used medicine is deferasirox. It comes as a tablet that's usually taken once a day.
It's unlicensed for the treatment of haemochromatosis, which means it has not undergone extensive clinical trials for this use. But your doctor may recommend it if they feel the possible benefits outweigh any risks.
You do not need to make any big changes to your diet, such as avoiding all foods containing iron, if you have haemochromatosis.
This is unlikely to be of much extra help if you're having 1 of the treatments above, and could mean you do not get all the nutrition you need.
You'll usually be advised to:
- have a generally healthy, balanced diet
- avoid breakfast cereals that have been "fortified" with extra iron
- avoid taking iron and vitamin C supplements – these may be harmful for people with high iron levels
- be careful not to eat raw oysters and clams – these may contain a type of bacteria that can cause serious infections in people with high iron levels
- avoid drinking excessive amounts of alcohol – this can increase the level of iron in your body and put extra strain on your liver