Adults with Alagille syndrome

Alagille syndrome is usually diagnosed early in life, with most children treated in paediatric services. Thanks to better treatments, many children grow up to be adults and move (transition) to adult health services. They keep having regular check-ups, blood tests and scans throughout their lives.

Some children with Alagille syndrome need a liver transplant before they become adults and others may need one later. After a liver transplant, they no longer have the liver problems caused by Alagille syndrome. But they still need care for other health issues linked with the condition. They also need to take medicines and have regular check-ups to keep their new liver healthy.

A small number of people are not diagnosed with Alagille syndrome until they are adults. This usually happens when there are no clear signs or symptoms during childhood. Adults may be diagnosed if they develop symptoms, or if they are tested for something else. A diagnosis can also happen if they have a child or family member with the condition and undergo genetic testing.

Adults are diagnosed and treated in a similar way to children. A team of specialists will check for issues with different parts of the body, including the liver, heart, eyes, kidneys, skeleton and blood vessels. Support and treatment for liver problems will depend on symptoms and complications and may include dietary support, medicines and surgery.

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