Books about PKU

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Children's

Everybody has something 

"Why me?" We've all heard the question, now here's the answer! Everybody Has Something clearly illustrates to children that we are all different from each other. It features real kids with real issues spanning from cavities to cancer. It's about diversity and acceptance, from a child's perspective. This book is for everybody because Everybody Has Something. (including PKU!)

Penny the Penguin has PKU.

Phenylketonuria (pronounced fee-nill-key-toe-NURR-ee-uh) or PKU is a rare, inherited metabolic disorder. Each year, approximately 1 in 14,000 newborn babies are diagnosed with PKU. If you have PKU, your body cannot break down, or metabolize, the essential amino acid, phenylalanine (Phe). Amino acids are the building blocks of protein. The primary treatment for PKU is a special metabolic formula and the restriction of foods high in Phe (protein), such as meats, cheeses, milk, bread and pasta. Life-long dietary compliance is a critical component for proper growth and development in children and quality of life in adults. We hope Penny The Penguin can help your child on this "diet for life" journey.

The Adventures of Ruby Pricklebottom Book 1: Ruby Has PKU

Learning to manage a special diet can be tricky for anyone of any age. It can be especially hard for kids. What is equally hard is being a parent of a child with dietary needs, trying to decide when to turn that huge responsibility over to the child. Ruby & Roscoe’s PKU Sidekick was created to help families begin the transition by providing a fun and engaging training tool for parents and children to work through together. Written in the style of a journal, this book allows children to fill in blanks and write down everything they’ll need to know in order to be successful at managing PKU. It’s packable size makes it a great tool for grandparents, babysitters, and teachers to utilize in communicating daily dietary intake with parents.


Ruby and Roscoe's PKU Sidekick

Learning to manage a special diet can be tricky for anyone of any age. It can be especially hard for kids. What is equally hard is being a parent of a child with dietary needs, trying to decide when to turn that huge responsibility over to the child. Ruby & Roscoe’s PKU Sidekick was created to help families begin the transition by providing a fun and engaging training tool for parents and children to work through together. Written in the style of a journal, this book allows children to fill in blanks and write down everything they’ll need to know in order to be successful at managing PKU. It’s packable size makes it a great tool for grandparents, babysitters, and teachers to utilize in communicating daily dietary intake with parents.

"A-Z with Frankie A PKU Friendly Learning Book," is not your average learning book. Parents will love reading this book with their kids as we learn with Frankie all about the Fruit and Vegetables in this world along with their protein values and fun facts. Frankie was born with PKU which is a genetic metabolic disease that doesn't allow her body to process protein. This book encourages children to open a conversation about how incredible this world is that we live in, and how unique each and every one of us are.


Frankie's Malibu A PKU Friendly Adventure

"Frankie's Malibu" is the first book in a series for families and friends supporting the metabolic disease community. This book introduces you to a little girl named Frankie. She lives in Malibu, California and was born with PKU otherwise known as Phenylketonuria. We travel with Frankie and her family through her wonderful world, not controlled by her metabolic disease, but celebrating life, and the community of Malibu. This book series is to spread awareness and open a conversation to other metabolic diseases in our world. Join Frankie as she begins her travel's with her parents, overcoming dietary barriers and exploring the beautiful world we live in.


Frankie's London A PKU Friendly Adventure

"Frankie's London" is the second book of Frankie's travel series supporting the metabolic disease community. In this book we travel with our little adventurer Frankie who was born with PKU otherwise known as Phenylketonuria, to London, England. Join Frankie and her parents as they learn all about this incredible city. From visiting Buckingham Palace to lighting a candle at Westminster Abbey, this book encourages children to learn about History and to explore this wonderful world we live in. We hope with this series we can continue to encourage people to spread awareness for our PKU community, and open a conversation to other metabolic diseases in our world.

Frankie's Paris A PKU Friendly Adventure

"Frankie's Paris" is the third book in Frankie's travel series supporting the metabolic disease community. In this book we travel with our little adventurer Frankie who was born with PKU otherwise known as Phenylketonuria, to Paris, France. Join Frankie and her Mom as they learn all about this gorgeous city. From visiting the Eiffel Tower to shopping in Montmartre, this book encourages children to learn about History and to explore the wonderful world that we live in. Our hope with this series is that we can continue to encourage people to spread awareness for the PKU community, and open a conversation to the other metabolic diseases in our world.


Frankie's Maui A PKU Friendly Adventure

"Frankie's Maui" is the fourth book in Frankie's travel series supporting the metabolic disease community. In this book we travel with our little adventurer Frankie who was born with PKU otherwise known as Phenylketonuria, to Maui. Join Frankie and her parents as they learn all about this beautiful island of the Pacific. From whale watching, snorkeling, and watching a sunrise from the top of a volcano, this book encourages children to learn about the Hawaiian culture, and to explore this wonderful world we live in. Our hope with this series is that we can continue to encourage people to spread awareness for the PKU community, and open a conversation to the other metabolic diseases in our world.

Frankie's Halloween A PKU Friendly Holiday

Join Frankie and her family as they celebrate Halloween together. From carving pumpkins, to haunted houses, to enjoying a warm bowl of pumpkin soup this book welcomes you to this family favorite holiday! Please join us in our efforts to help spread PKU awareness around the world with Frankie.

"Happy Birthday Frankie" is the fifth book in a series for families and friends supporting the metabolic disease community. This book is a love letter to the families of children born with rare diseases. Join Frankie as she celebrates the precious gifts of life, love, and family on the most special of days, her birthday.

Happy Valentines Day Frankie

Join Frankie as she celebrates Valentines Day with her family. During a year of uncertainty, Frankie puts her best foot forward and reaches out virtually to friends around the world. Even being stuck at home, Frankie finds a way to share her love and kindness with friends and family. (Please join our efforts to help spread PKU awareness around the world with Frankie.)

Adult

The PKU Paradox

[In a lifetime of practice, most physicians will never encounter a single case of PKU. Yet every physician in the industrialized world learns about the disease in medical school and, since the early 1960s, the newborn heel stick test for PKU has been mandatory in many countries. Diane B. Paul and Jeffrey P. Brosco’s beautifully written book explains this paradox.

PKU (phenylketonuria) is a genetic disorder that causes severe cognitive impairment if it is not detected and treated with a strict and difficult diet. Programs to detect PKU and start treatment early are deservedly considered a public health success story. Some have traded on this success to urge expanded newborn screening, defend basic research in genetics, and confront proponents of genetic determinism. In this context, treatment for PKU is typically represented as a simple matter of adhering to a low-phenylalanine diet. In reality, the challenges of living with PKU are daunting.

In this first general history of PKU, a historian and a pediatrician explore how a rare genetic disease became the object of an unprecedented system for routine testing. The PKU Paradox is informed by interviews with scientists, clinicians, policymakers, and individuals who live with the disease. The questions it raises touch on ongoing controversies about newborn screening and what happens to blood samples collected at birth.


Robert Guthrie--The Pku Story: Crusade Against Mental Retardation

All newborns in the U.S. and in many parts of the world now have a couple of drops of blood drawn from their heels in order to test them for PKU and a host of other genetic disorders that can cause mental retardation or premature death if not treated immediately. This is the biography of the man best known for his development of newborn screening for PKU. Yet this was only one of his prodigious accomplishments. Tests were developed in Bob Guthrie's laboratory for more than 30 treatable disorders that cause mental retardation or death, giving the term "newborn screening" fresh meaning. He also waged a battle against lead poisoning long before the public or the medical community became concerned about this danger and was a member of the Physicians for Social Responsibility-an organization devoted to preventing nuclear war and o-posing nuclear weapons testing.

Sheila: Unlocking the Treatment for PKU

In 1951, at two years of age, Sheila Jones was diagnosed with Phenylketonuria (PKU). With no treatment available, Sheila’s mother Mary persevered until she obtained help from three pioneering doctors at Birmingham Children’s Hospital. They worked tirelessly to prepare a special formula for Sheila making her the first person in the world to receive dietary treatment for PKU.

In this new book to be published in October 2020 Anne tells the remarkable story of Sheila and her important legacy – the introduction of newborn screening and worldwide treatment for PKU.

‘ In 1971, twenty years after Sheila was diagnosed, newly qualified junior biochemist, Anne Green, began her scientific career at the same hospital where Sheila was first treated. Since then Anne’s career and Sheila’s story intertwined which led to Anne’s desire to find out more about Sheila’s life with her brothers and her courageous and tenacious mother. This book is the fulfilment of a career-long interest in PKU and newborn screening’.



My PKU Life

Ten years ago Carrie Hall started the labour of love that turned in to this book. She details the first 20 years of her life growing up in the 80's and 90's living with PKU, being teased at school, relating to friends, eating out, cheating on diet and several other issues PKUers and their families face.In the book you will find an innovative feature entitled "My 2 Cents" where Carrie asks the questions that every person with PKU and their parents ask. Carrie answers them, relating to her own experiences and also provides answers from other PKU teens, adults and parents of PKU children so the reader benefits from the experiences and opinions of several people.This book is in a one of a kind format worth reading.

My Journey to Motherhood

Carrie's second book details her first journey through maternal PKU from the decision to have children to the birth of her now 4 year old son. She details the normal pregnancy challenges with the twists the PKU can add to the situation.

Having Hope: Diary of a Maternal PKU Pregnancy

The third book in the PKU novel series, written by Carrie, Having Hope is a candid look inside her second pregnancy as she shares her private journal entries with her readers.

Cookbooks/Recipes

Recettes Faibles en Protéines

Vous pensez que les plats faibles en protéines sont fades, sans saveur, difficiles à réaliser, peu variés, et qu'ils ne peuvent pas être servis à tous vos invités parce qu'ils seront déçus? Dans ce livre, Recettes faibles en protéines vous prouve le contraire! Des recettes délicieuses et visuellement attrayantes, dignes de grandes occasions mais conçues pour les repas de tous les jours. Elles plairont assurément à tous! Dans ce livre, les recettes sont regroupées pour certains évènements spéciaux : Noël, Superbowl, souper de filles, cabane à sucre et sauces pour pâtes. Ces recettes prouvent à tous qu'il peut être facile et surtout délicieux de restreindre son apport en protéines.Ces recettes proposent différentes façons d'utiliser plusieurs aliments faibles en protéines trouvés facilement en supermarché, afin de les intégrer plus facilement dans votre quotidien et améliorer la variété de votre alimentation. De plus, la valeur nutritive de chaque recette a été calculée afin de fournir la teneur précise en énergie, protéines, phénylalanine, tyrosine et leucine.


Low Protein Recipes

Do you believe that low protein food is tasteless, hard to cook, repetitive or impossible to serve to all your guests, unless you want to disappoint them? This recipe book will prove you wrong! Delicious and attractive recipes are presented in these pages, for great occasions, but also for daily meals. Plus, those recipes will please everyone around the table! This book regroups recipes into different categories such as: Christmas, the Superbowl, girl's night, sugar shack, and pasta sauces. These recipes are proof that it can be easy and most importantly delicious to restraint your protein intake.These recipes suggest numerous ways to use low protein ingredients that are easily found at the grocery store, and how to integrate them to your routine while diversifying your meals. Furthermore, nutritional values have been calculated in order to give you the precise amount of calories, proteins, phenylalanine, tyrosine, and leucine. This book regroups recipes into different categories such as: Christmas, the Superbowl, girl's night, sugar shack, and pasta sauces. These recipes are proof that it can be easy and most importantly delicious to restraint your protein intake. These recipes suggest numerous ways to use low protein ingredients that are easily found at the grocery store, and how to integrate them to your routine while diversifying your meals. Furthermore, nutritional values have been calculated in order to give you the precise amount of calories, proteins, phenylalanine, tyrosine, and leucine.


Maria's Low Protein Cook Book

This is a collection of creative low protein recipes with excellent photographs of the dishes for those who must maintain a protein-restricted diet for treatment of PKU or similar inherited diseases of protein metabolism. This book was created by a low protein cooking specialist and a professional home economist with hopes to make reader's lives a bit easier and to share personal culinary experience and expertise. Low protein diets may feel restrictive and full of limitations but with the right ingredients and some basic cooking skills, it is possible to have low protein fine dining at home. Time is valuable so most of the recipes are quick and hassle free. Learning to cook from scratch is the best way to gain full control of the diet and eat healthy and low protein food.

Natural Alternatives for PKU: Healthy Eating on a Low  Protein Diet

Working With PKU•With a diagnosis of PKU, for a family member and interventions from the metabolic clinic and doctors. •With little consumable PKU foods on the retail market and most of the products are starch, no fiber, junk, manufactured ingredients, carbohydrate loaded and incredibly expensive. •With limited resources and knowledge on improving a PKU diet and making food appealing to the PKU’er. •With frustration and apathy, my mind becoming a total blank on food, phe, levels, and blood tests.

Low Protein Cookery for Phenylketonuria

Much more than a cookbook, Low Protein Cookery for Phenylketonuria (PKU) is a practical and easy-to-use guide for those who must maintain a protein-restricted diet for treatment of PKU or similar inherited diseases of protein metabolism. It contains hundreds of helpful suggestions for managing the diet. This third edition of Low Protein Cookery for PKU appears exactly twenty years after the original 1977 publication and includes the 450-plus recipes and the hints from the 1988 second edition that have been used and enjoyed by families for nearly a decade.
    The major new feature of the third edition is entirely new nutrient calculations. The available food supply has changed significantly in the past fifteen years, and nutrient information is much better now. The nutrient calculations in this edition of the cookbook are based on the updated 1995 Low Protein Food List for PKU  compiled by the author, which is the most widely used food list for the PKU diet in the United States. Some of the changes in nutrient values are subtle, others more significant; all reflect the best information currently available.
    Low Protein Cookery for PKU offers recipes that appeal to a wide range of ages, suit a wide range of individual diet requirements, and facilitate integration of the diet into normal family eating routines. Many of the recipes are suitable for the entire family; others include instructions for adapting the recipe to suit the needs of family members not on the diet, or are accompanied by recipes for the preparation of similar non-diet items. The recipes provide gram weights when appropriate, for greater accuracy in preparing the recipes and in maintaining the diet.


Have we missed any? Please email us at info@canpku.org to let us know any books that we may have missed!

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