Rare Voices Australia has recently published, “The Australian Experience of Living with a Rare Disease: personal stories”. This is a personal look at the daily lives of individuals and families who are generous enough to share their experiences. It also captures the growing awareness of why we need to join together for better care. A co-ordinated approach for access to services within Australia for people living with a rare disease is a key message.
The individual stories in this book are simply written and provide real insight. Listening to the stories and recognising patient expertise, is described as the key to working in collaboration and reaching better health outcomes. The patient stories help build greater understanding. Chapters begin with a brief description followed by stories. Each story has a colourful portrait photo. For example, in the Diagnosis chapter, Kerry tells, “it took 49 years to diagnose my rare disease”. In Jessica’s story her mother Sharon describes how “our journey to diagnosis wasn’t easy. We waited several months to receive genetic test results from the USA”.
The reader will benefit from the easy-to-read stories, health professionals can be challenged by patient experiences; government bodies can see the value of a co-ordinated approach to the daily lives of Australian families living with rare disease.
“The Australian Experience of Living with a Rare Disease: personal stories” is a wonderful resource. Many of the individuals and families in the book have also taken up the role of advocate, working with others through support networks. Find links to support resources throughout the book.
A hardcopy is also available for loan from the AWCH library.