Explaining why we are all different and the concept of rare diseases to children (and many others) is very challenging. And necessary when an estimated 1 in 10 people live with one or more of the 7,000 rare diseases described to date. These are important discussions to have. The earlier the better. To start one discussion is – Should doctors be thinking of Occam’s razor or zebras? Occam’s razor theory isIf you have two competing ideas to explain the same effect, go for the simpler one. While teaching the diagnosis of diseases, Dr Theodore Woodward, tells student doctors to go for the most common diagnosis by saying: “When you hear hoofbeats behind you, don’t expect to see a zebra”

So the zebra was chosen to represent rare diseases or conditions. These are so very infrequent that many doctors may see a handful of cases in their lifetime, and this often leads to a diagnostic odyssey that may take years. Without a diagnosis there is uncertainty and no possibility of the best treatment. Everyone is different, sometimes for the better, sometimes not but we must embrace our uniqueness and individuality. I know I was smiling at many parts.

FORWORD

Professor Sulev Kõks
Head of Genetic Epidemiology Research
The Perron Institute and Murdoch University, Perth Western Australia

We are all different, and this is the recognition of these differences that strengthens and improves our communities. The Pysanka Chicken is an innovative approach to address how we are all united by being different. This book combines a centuries-old tradition with a modern medical need and differences arising from health conditions. It is a much-needed book that teaches kindness and the bravery to recognise and protect differences.

This is an inspirational book to encourage readers to fight for the patients living with rare diseases.