Managing your life with Phenylketonuria (PKU)

Managing PKU: you owe it to yourself

Managing Phenylketonuria (PKU) is not something you need do on your own. Whether you’re caring for a baby newly diagnosed with PKU, helping a child take steps towards independent well-being, taking charge of your life as a teenager, or living-up to a life-long commitment to treat your disorder, help is at hand.

In this section, you’ll find tips and tools about how to manage PKU from week-to-week, how to balance your health needs or those of your family without compromising what you want from life: to live it to the full.

• As parents of a baby newly diagnosed with PKU, develop the confidence to manage your baby’s diet and juggle your family’s needs.
• As a family learning to adapt, prepare your child for school and communicate with carers.
• As a teenager, find out how to participate in everything going on around you and talk with friends so they understand more about the challenges you face.
• As an adult living with the disorder, discover treatment options and that it’s never too late to get back on track.

Find help within these pages and seek out your PKU team for more advice.