Moving from child to adult services (transition)

As children grow up, they will start to take more control of their condition themselves. Eventually they move to specialist adult services.

If Wilson’s disease is diagnosed in childhood, parents or carers will work with a specialist children’s (paediatric) team to support their child.

But Wilson’s disease is a lifelong condition. So children must learn to understand and manage it themselves.

This is a slow process, it usually begins around age 14. You may hear it called “transition”.

Some hospitals have a specific transition programme. This may involve a specialist nurse and support from a psychologist or social worker.

Eventually, once they are an adult, your child will move to a specialist adult Wilson’s disease team.

Alcohol and Wilson’s disease

Wilson’s disease is not caused by alcohol. But alcohol makes liver damage worse. People with cirrhosis must not drink. Others should stay under the UK guidelines.

Alcohol is bad for everyone’s liver. It causes damage that can build up over time. The best way to avoid this damage is to avoid drinking alcohol.

Anyone with serious damage (cirrhosis), must not drink any alcohol.

Adults who do not have cirrhosis and choose to drink alcohol should stay within UK alcohol guidelines. This is 14 units a week,

• about 6 pints of 4% beer or
• 6 medium sized glasses of wine

They should also aim to have 3 days in a row each week with no alcohol.

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Family planning, pregnancy and breast feeding with Wilson’s disease

People with Wilson’s disease can have children. Without treatment there seems to be a risk of infertility and baby loss. But with treatment these risks go down a lot.

Contraceptives and Wilson’s disease

If you are having sex and do not want to have a baby, then it is important to use an effective contraceptive.

Wilson’s disease can reduce fertility in men and women. But this is different for everyone. It is possible for people with Wilson’s disease to have babies. Even if their condition is not well controlled.

Your choice of contraceptive can depend on lots of things including how severe your Wilson’s disease is. Barrier methods, such as condoms, are safe for everyone.

You should not have a copper coil (intrauterine device, IUD) if you have Wilson’s disease.

Talk to your specialist Wilson’s medical team about your options.

Transition teams who help teenagers move into adult services can also help with this.

Pregnancy and Wilson’s disease

People with Wilson’s disease can have children safely with treatment. Copper chelation medicines are safe in pregnancy and breastfeeding. But stopping treatment can harm mother and baby.

Some people notice symptoms for the first time during pregnancy. Or changes to their symptoms if already diagnosed.

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Education with Wilson’s disease

Children and young people with Wilson’s disease can go to normal schools, colleges and universities. Some might need some extra help, especially if their condition is not found early.

Short term changes at school due to symptoms

Children and young people with Wilson’s disease may have symptoms of liver damage. This can include:

• feeling very tired (fatigue)
• feeling sick (nausea)
• tummy ache and digestive problems.

These symptoms usually get better once a child starts treatment. But this can take a while. It might be necessary to make some changes to school and other activities while this happens.

Find out more about coping with fatigue.

What longer term support might children need?

Some children will need ongoing support at school because of Wilson’s disease.

Changes in your child’s brain can sometimes affect how well they do at school. Wilson’s disease can also cause changes to a child’s behaviour. These can be mistaken for  other medical conditions or put down to naughtiness.

Talk to your Wilson’s medical team if you have any worries about your child’s education, behaviour, or other activities. They can help you to work out the best plan for your child. 

How to get school support for your child

Wilson’s disease is very rare. It is very unlikely that your child’s teachers will have experience of it. Let the school know as soon as your child is diagnosed. You can share a link to this information so that they can find out more.

We also offer support packs for nurseries, schools and colleges. These can help your child’s teachers to understand their condition and how best to support them.

Find out more about support for children, young people, and their parents, here. 

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Work and Wilson’s disease

If Wilson’s disease is found early and treated well, it shouldn’t stop you from working or choosing the job you want.

If or how Wilson’s disease affects your work will depend on any symptoms you have and on how well controlled your condition is.

Do I have to tell my employer that I have Wilson’s disease?

You do not have to tell your employer that you have Wilson’s disease. Unless there is a safety reason why they need to know.  But there can be advantages to telling them. Especially if you are suffering from symptoms like fatigue. Or if you need to take extra time off for medical appointments.

Sharing information can help reduce misunderstandings at work. There are a lot of myths and misunderstandings about liver disease and Wilson’s disease is very rare. Your employer may never have heard of it. It could help to share this information with them to help them understand your condition.

Find out more:

• Work when you have a liver condition
• Telling people about your liver condition

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