Living with PKU
A low-protein life with Phenylketonuria
Author: Pauline O'Connor
Pauline O'Connor is an author of fiction and non-fiction, and a patient advocate. She campaigns for brain injury survivors, and for those diagnosed with the rare disease, Phenylketonuria (PKU). A brain injury ended Pauline’s successful careers in winemaking and education. Now, she pursues her passions for advocacy and writing.
A clear, compassionate guide drawn from 40+ years of PKU life.
Pauline explains PKU with remarkable clarity. Drawing on decades of personal experience and honest reflections, it helps teens, adults, and families navigate dietary complexities, emotional challenges, and everyday life with PKU.
⭐⭐⭐⭐⭐ "Absolutely brilliant & factual…lots of very good advice."
Read a free sample of Living with PKU
- Paperback ISBN: 9781739635619
- Ebook ISBN: 9781739635602 ASIN: B0B4FB651S
A valuable resource for PKU
Living with PKU is a valuable resource for adults and teens with Phenylketonuria (PKU), or for families new to the disorder.
In clear and simple language, this book explains PKU and offers practical advice on living with it, including:
• PKU and mental health
• Managing PKU clinics
• Travel & emigrating
• Women & PKU
• Healthy eating and exercise
Pauline has lived with PKU for over forty years. In this honest account, she shares her experience and mistakes to help others navigating the difficult dietary treatment.
Who it's for:
- Those newly diagnosed with PKU, or
- those with an allied disorder or a low-protein diet therapy.
- Parents and caregivers
- Dieticians, teachers, and allied health professionals
What you'll discover:
- How PKU shapes choices, moods, and our professional & social lives
- Practical advice on low-protein living
- Stories of mistakes, insight, and acceptance
Author Insight:
"I want to share my ups and downs, experience and mistakes to help others navigating the difficult dietary treatment."
Praise for Living with PKU:
“Completely fabulous. Brilliantly written.” — Suzanne Ford, NSPKU Dietician
“Well-written, as well as wise, and never once does it run out of steam or become dull to a non-knowledgeable reader.” — Alex Gazzola, journalist and author of Allergy Insight.
⭐⭐⭐⭐⭐“This would be an excellent book for anyone with PKU, their friends and family, and importantly, clinicians treating those with PKU. Knowing what the lived experience is of PKU is essential to providing better care and this should be read by GPs, dieticians, and consultants alike. Highly recommend!” Philippa Turner on Amazon
⭐⭐⭐⭐⭐ “Thank you for writing this book... covered everything and is an invaluable resource. I will never truly know the challenges a life with PKU will entail but I feel this book has equipped me with some insights that will help me help my niece navigate through them.” Amazon review.
Buy the book:
- Links to your favourite store
- Read a free sample
- Get a free copy of the Mental Health and PKU chapters when you subscribe (for free) to this website.
Living with PKU – Frequently Asked Questions
What is "Living with PKU" about?
This book offers a compassionate and practical guide to living well with Phenylketonuria (PKU), a rare inherited metabolic condition. It shares real-life experiences, nutrition strategies, mental health tips, and support tools for individuals and families managing a low-protein lifestyle.
Who is this book for?
It's ideal for adults living with PKU, parents of children with PKU, carers, teachers, dieticians, and anyone seeking a deeper understanding of life with this rare condition.
What makes this book different from clinical guides?
"Living with PKU" shares the lived experience. It goes beyond the science, exploring emotional wellbeing, social challenges, and identity with insight and honesty. It complements clinical advice with day-to-day lived wisdom.
Is this book medically accurate?
Yes. While it’s not a replacement for professional medical advice, the content has been informed by research and reviewed by individuals with lived experience and expert dietitians.
Does the book include dietary advice or recipes?
It includes discussion around managing the PKU diet in daily life, including shopping, social situations, and cooking low-protein meals, but it is not a recipe book. For that, see the companion titles in the Low Phe series.
Is it available in print or ebook?
Yes, "Living with PKU" is available in both paperback and ebook formats through all major retailers.
Where can I buy the book?
You can order find links to major online bookstores here
Can I read a free sample of the Living with PKU book?
Yes! You can either:
- Read the first 40 pages of this book free via the Amazon sample. Or,
- Get a free copy of the Mental Health and PKU chapters when you subscribe (for free) to this website.
