What are the symptoms of PKU?
If PKU is not treated, symptoms may start to appear. These can include:
- Intellectual disabilities
- Developmental delays
- Seizures
- Behavioural problems
- Skin rashes
- Musty or “mouse-like” body odour
What causes PKU?
PKU is caused by a change in a gene that is responsible for making the enzyme needed to break down phenylalanine. This genetic change is inherited from parents, which means it can run in families.
How common is PKU?
PKU is a rare condition. In the UK, it occurs in about 1 in every 10,000 to 15,000 newborns.
Who is more likely to get PKU?
Since PKU is inherited, it is more likely to occur in families with a history of the condition. It can affect people from any background, but it is more common in individuals of certain ethnic groups.
How can I treat PKU?
Although there is no cure for PKU, it can be managed with a strict diet that limits foods high in phenylalanine. This includes:
- Meat and fish
- Dairy products
- Nuts and soy products
- Certain grains
Instead, people with phenylketonuria can eat special medical foods that are safe for them.
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How to live with PKU?
Living with PKU means following a careful diet for life. Regular check-ups with health professionals to monitor phenylalanine levels are important. Having support from family, friends, and healthcare providers can help manage the condition effectively.
What support is available for people with PKU?
People with PKU can access support from dietitians, who can help them plan their meals. Support groups are also available, providing a space for individuals and families to share experiences and advice.
Final thoughts
PKU is a manageable condition with proper dietary care. If you have concerns or think you may be at risk, speak to your GP or healthcare provider for guidance and support.
