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Living with - DiGeorge syndrome (22q11 deletion)

People with DiGeorge syndrome can be affected in different ways. This means it's difficult to predict how severe the condition will be. But most children survive into adulthood.

As someone with DiGeorge syndrome gets older some symptoms can become less of an issue. For example, heart and speech problems.

But behavioural, learning, and mental health problems can continue to affect their daily life.

Outlook for DiGeorge syndrome

Many people with mild symptoms of DiGeorge syndrome will live a long and active life. Severe symptoms can mean a shorter life expectancy if they do not get the right treatment.

Even with the right treatment, lifespan may be shortened. For example, some children with severe congenital heart disease may die in infancy.

It's important to attend regular check-ups so that any problems can be found and treated early.

Adults with DiGeorge syndrome are often able to live independently.


Page last reviewed: 1 June 2026
Next review due: 1 June 2029