Being diagnosed with a genetic condition

Even if you are one of those people who has no symptoms and never actually develops haemochromatosis, being told you have the gene variants may still have an impact on you. Knowing that you can potentially pass this on to your children can be upsetting. There’s no right or wrong way to feel. So give yourself time to digest and come to terms with it.

You may not have heard of haemochromatosis before. And most other people you meet won’t have. That can be scary – particularly as it’s lifelong. Many people who are diagnosed will know others in their family who have it and can talk it over with them.

Liver UK is here to support you too. We have support groups and an online community to help you meet others in the same situation, as well as a nurse helpline for information, advice, or when you just need to talk. Find out more further down this page.

it’s important to know that haemochromatosis is usually well controlled these days. Providing you stick to your treatment schedule, you are unlikely to develop any serious health problems because of it.

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Diet and haemochromatosis

Doctors no longer recommend cutting out foods containing iron. However, it makes sense not to overdo it if you have iron overload. If you eat meat, you can have red meat if you want to – but have it now and then, as a treat. Don’t take iron tablets, or multivitamins that contain iron. And it’s sensible to avoid foods that have extra iron added, as some breakfast cereals have.

As with anyone else, aim for a healthy, balanced diet, with plenty of fresh fruit and vegetables, along with some protein and carbohydrates. Avoid eating too much salt and sugar. As people with haemochromatosis have a higher risk of diabetes, it’s best to try to keep to a healthy weight. Being overweight also increases your risk of liver damage from a condition called fatty liver.

There is one particular risk to people with haemochromatosis. You shouldn’t handle or eat raw or undercooked fish or shellfish. It can be contaminated with marine bacteria that can cause serious infection in people with haemochromatosis gene variants. The bacteria grows more easily in iron rich environments, which is why it is more of a risk to you.

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Alcohol

If you’ve recently been diagnosed, it’s best not to drink alcohol until your iron levels are back to normal. After that, there’s no reason why you shouldn’t drink in moderation if you want to. But it’s best to stick to the UK guidelines of fewer than 14 units a week. Try to have at least 3 alcohol free days in a row each week.

Drinking too much, too often, will put extra strain on your liver.  It pays to look after your liver in general if you have haemochromatosis. If you do develop iron overload, you will be more at risk of complications if you have other liver problems as well. You are at risk from other factors in liver disease, which includes alcohol.

People with haemochromatosis also have a higher than average risk of thinning bones (osteoporosis). Heavy drinking can affect your bone density by decreasing the activity of cells that lay down healthy bone.

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Coping with fatigue

Many people with haemochromatosis have problems with fatigue, even if they don’t have iron overload.  Fatigue caused by a disease isn’t just feeling a bit tired. Of course sleeping and eating well will help to minimise it. But you can’t fight your way through it. It’s more a case of learning how to manage it.

If fatigue is a problem for you, you may find there are times of the day when you’re more or less tired. There may also be particular activities that make your fatigue better or worse. Once you are aware of this, you may be able to adjust your routine to suit you better. Accepting help from family and friends isn’t always something people find easy. But if you ask, you’re likely to find that they are only too willing to lend a hand if you’re struggling.

It’s proven that exercise can help to combat fatigue caused by many health conditions. It’s also known to help with mental health.  There are no special guidelines for exercise and haemochromatosis. Weight bearing exercise is good for keeping your bones healthy.  That means exercising when your body weight is supported by your legs – so, walking, running or dancing for example. Exercising regularly will also help you to maintain a healthy weight. Don’t overdo it though. You need to find a balance.

If you’re struggling to cope with fatigue, speak to your doctor. It may be worth having some tests to make sure there isn’t anything else making your fatigue worse. Sometimes people with haemochromatosis have lowered thyroid hormone levels, or low testosterone in men for example.

You can read more information about fatigue here

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Joint pain

Joint pain and arthritis are common in people with haemochromatosis. It can affect your knuckles, hips, knees and ankles.

Unfortunately, treatment with venesection doesn’t seem to help with joint pain.  Although you may feel like doing the opposite, keeping active helps to reduce pain and stiffness in the long term. Maintaining a healthy weight will help to minimise strain on your joints too. You can take painkillers and anti-inflammatory medicines, such as ibuprofen to help manage pain. Don’t take them on an empty stomach as they can damage your stomach lining.

If you are having trouble coping, speak to your doctor. It may help to see a physiotherapist. Unfortunately, people with haemochromatosis do tend to develop arthritis at a younger age than average and may be more likely to need physio or even joint replacement surgery later in life.

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Talking about having a genetic condition

For most people, daily life won’t be heavily affected by having haemochromatosis. Even so, there may be times when you have to explain your condition to someone and that can be hard. You may need to take time off work for blood tests, which will mean explaining to your employer.  Of course, most employers will be sympathetic and accommodating. But it helps to know that haemochromatosis is a protected condition under the Equality Act of 2010. Employers have to make reasonable adjustments for you, which includes time off for tests and treatment.

Remember you can tell people about the information here. Then they can read about it for themselves, without you having to repeat the same things over again.

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