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Getting a diagnosis

Young people can be diagnosed with a long-term health problem at any age. This can be at birth or when they’re a few months old.

Simon’s mum noticed symptoms when he was 2½. He was referred to hospital for tests. It was a shock and hard having to miss school because of hospital appointments.  

Caitlin’s parents had always known something was wrong. As she got older, her legs started getting weaker. Later she started losing strength in her arms and hands too. 

Some people find out about their illness when they’re children, in their teens, or in their early twenties. GPs will normally be the first port of call for long-term conditions. They may diagnose the condition themselves or refer the person to hospital for further tests. For many long-term health problems, the ongoing care after diagnosis is organised (co-ordinated) by the GP and specialist nurses in the surgery. This can include helping to chase up tests and talking with the specialists as and when needed. Some people with long-term conditions need to have regular blood tests – these are often done at the GP surgery and the results are sent to the specialist.

Jalé’s symptoms wouldn’t go away. It was hard to describe them and the appointments felt rushed.