Gilbert’s syndrome is a mild liver condition that causes jaundice (yellowing of the skin). It is considered to be harmless and does not lead to liver damage.
*This website provides general information but does not replace medical advice. It is important to contact your/your child’s medical team if you have any worries or concerns
What causes Gilbert’s syndrome?
The condition is inherited when both parents pass on a faulty gene. In fact, the gene causing Gilbert’s syndrome is common within the UK population (affecting about 4 in every 100 people). Many people do not show any signs of the condition. Parents will often also have the disease but may not have any episodes of jaundice. The gene affected is called UGT1A1. In Gilbert’s syndrome a small change in the gene means that less of the enzyme (protein), which would normally remove bilirubin from the body, is made. This leads to an increase in bilirubin in the blood. It is then seen in the skin and whites of the eyes causing a slight yellow discolouration, known as jaundice. The condition seems to affect boys more commonly than girls and is often diagnosed in teenage years.
What are the symptoms of Gilbert’s syndrome?
Occasional jaundice is the most common symptom. Sometimes this may be accompanied by other symptoms such as:
- Vague abdominal discomfort
- Generally feeling tired. This may be made worse by infection, over-exertion, stress or periods of dieting/fasting
- There may have been jaundice as a baby
- There may be other members of the family with Gilbert’s syndrome
Episodes of jaundice can be triggered by:
- Being dehydrated
- Fasting
- Not getting enough sleep
- Having an infection
- Being stressed
- Physical exertion
- Having surgery
- Menstruation (periods)
How is Gilbert’s syndrome diagnosed?
- Using a full medical history including any history of liver disease in the family
- Clinical examination and tests (including blood tests). If liver function tests are normal, except for a higher unconjugated bilirubin level than normal, this would lead to a diagnosis of Gilbert’s syndrome in most cases
- The gene for Gilbert’s syndrome can be tested if the diagnosis isn’t clear
What is the treatment for Gilbert’s syndrome?
Treatment is not required because the condition does not progress (get worse) or cause damage to the liver. Young people may find that feeling tired can affect everyday life but this can be helped by encouraging young people to:
- Listen to their body
- Try and have a healthy, balanced lifestyle including a healthy diet
- Get exercise and plenty of sleep
What else can be done?
Tiredness and general lethargy can be a real struggle. It can be helpful for young people to talk to their school/college nurse or to their employer to explain Gilbert’s syndrome to them to ensure young people can get support and empathy. It may be that by making small life adjustments a difference can be made.
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If you have any questions about this resource, or if you would like information on the evidence used to produce it, please email: info@childliverdisease.org
