Living with PKU in childhood

The carers of children with PKU have the crucial job of keeping their children safe and well through delivery of the PKU diet every day.

On this page, you will find resources to support parents and carers.

Managing the PKU diet in childhood:

Managing PKU treatment in your family life
A step by step guide for parents and carers

Advice for grandparents, family carers and childminders:

This resource gives sensible advice to help family members understand PKU and gain enough confidence to help.

Living with PKU as a teenager or young adult

The teenage years can be a challenging time for people with PKU. Learning to be independent, managing peer pressure and also going through the crucial time of exams and starting a career.

“For some, this stage of growing up is a challenging, lonely and difficult time. Being able to identify the struggles will help negate these feelings and hopefully offer support, leading teenagers to emerge with confidence in who they are, placing their PKU confidently within their identity.”

Anne Daly, Dietitian, Birmingham Children’s Hospital

On this page, you will find advice and guidance about managing your PKU through this important stage of life.

Living with PKU as an adult

All adults with PKU should have annual follow-up by a metabolic team.

It is recommended that adults need to keep their phenylalanine levels controlled throughout their life

You can read more about the recommendation for life long treatment here in this article by Dr Ben Green and NSPKU dietitian Suzanne Ford.

You can find resources about returning to the PKU diet here.

It can be very challenging to stay on the PKU diet through your whole life. NSPKU is calling for improved support for all adults with PKU to cope with this lifelong condition.

Tom’s story
Tom Chimiak, a young professional film-maker, talks to NSPKU Conference 2019 about managing his condition alongside his busy life. (28 minutes)

Living with PKU … during pregnancy, whilst planning a pregnancy and as a new mum

Women with PKU need extra support to have healthy pregnancies.

High phenylalanine levels during pregnancy can restrict the normal development of the unborn baby. This can cause permanent harm, such as brain damage (leading to learning difficulties), microcephaly (a small head), heart defects and a low birth weight. This damage is known as maternal PKU syndrome.

Women with PKU need to be reassured that they can have healthy pregnancies with the right planning and support.

This section contains resources about managing PKU in your pregnancy.

The BUMPER PACK

http://www.nspku.org/publications/publication/maternal-pku-gp-checklist-managing-pregnancy-phenylketonuria

As part of our research and advocacy work, NSPKU has called for improvements in the care available for women with PKU to support their pregnancy and maternal experiences.  You can read more about our research in this area here:

http://www.nspku.org/publications/publication/reproductive-experience-women-living-phenylketonuria