PKU directory - PKU information sources and services

Looking for a PKU specialist, dietitian or nutritionist, supplier, or PKU association in your area? Discover them here.

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Facts

I have Phenylketonuria (PKU) and my pregnancy wasn’t planned. I don’t know whether I can cope if my child is born with severe disabilities. Who can I speak with?

Each day an unborn child is exposed to high maternal blood Phenylalanine (Phe)

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How does prescription formula differ from standard formula?

Babies with Phenylketonuria (PKU) receive a special formula that contains every

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Building an independent life

Phenylketonuria or PKU is an inherited disorder, which prevents your body to break down Phenylalanine (Phe), an amino acid found in food protein. High levels of Phe build up in the blood and cause brain-associated problems especially during childhood, but also during adolescence and adulthood.
Phenylketonuria or PKU is an inherited disorder, which prevents your body to break down Phenylalanine (Phe), an amino acid found in food protein. High levels of Phe build up in the blood and cause brain-associated problems especially during childhood, but also during adolescence and adulthood.

Facts for teenagers with PKU 

Phenylketonuria or PKU is an inherited disorder, which prevents your body to break down Phenylalanine (Phe), an amino acid found in food protein. High levels of Phe build up in the blood and cause brain-associated problems especially during childhood, but also during adolescence and adulthood.   

High levels of Phenylalanine (Phe) in the blood make it harder to concentrate; it slows down reactions and makes you more emotional. It’s common to feel worried or depressed about things that your friends may simply shrug off. 

Managing Phenylalanine (Phe) levels is essential at every stage of life. The difference now, is that it’s your turn to begin taking charge.

Your PKU specialist and dietitian or nutritionist will determine your blood Phenylalanine (Phe) target level and how best to achieve it. Depending on your lifestyle, your PKU specialist might also suggest dietary and medical treatment options that will help you maintain blood Phe at a low level and within a target range.   

It’s entirely possible to live a full life and manage blood Phenylalanine (Phe) levels within a safe range. Being a teenager with PKU doesn’t mean you need to miss out. You don’t need to go it alone.

Understanding who you are: achieving better PKU management

Learn how it’s possible to be healthy and enjoy life to the full by managing your blood Phenylalanine (Phe) levels treatment, which has been adapted to suit your lifestyle.

Also see The science of PKU for a medical explanation of PKU and to learn about the importance of managing blood Phenylalanine (Phe) levels.