Living with PKU: A low protein life with Phenylketonuria

This bold, smart and authentic memoir and PKU (phenylketonuria) resource guide was a pleasure to read. I will be sharing copies with my daughters who have PKU. It took all day to read, but I could not put it down as it reveals so many fascinating facts about life with PKU. These are things only a person with PKU will know, and their family and healthcare providers probably do not. The details are meticulously researched and referenced, while at the same time presented in a readable, friendly and very supportive voice. The author is both encouraging and optimistic, and is herself a wonderful example of leading a successful and full life while having PKU.

When our daughter was diagnosed with PKU, we were scared, and the internet just made us more scared. This book was so helpful because it gave us the perspective of somebody with PKU and how our daughter might feel someday. It helped learning about resources and knowing that our daughter can still be just as successful as any other kids. This book helped educate me, put me at ease, and feel more prepared and hopeful. I recommend this for any other new PKU parents.

Great book to learn more about PKU

This is extremely well-written and goes into the history of the discovery of PKU, what it is like to live with PKU everyday, and what future treatments are on the horizon. Throughout, the author shares her own experience of living with PKU in vivid detail, including the challenges it brings. However, there are also lots of helpful pieces of advice, and looking forward to actual and potential future treatments beyond diet means this book also strikes notes of optimism. 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!

A clear, readable and fascinating dive into the world of PKU: I learned so much from this book. Essential reading for patients, their families, healthcare workers, dietitians and others.