Rare Voices
Australia, 2014.
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 Stories
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.
Visit the Rare Voices Australia website to view “The
Australian Experience of Living with a Rare Disease: personal stories”. The
book is downloadable in PDF ( http://www.rarevoices.org.au/
).
A hardcopy is also available for loan
from the AWCH library.
Jillian Rattray
AWCH Librarian
February, 2014
No comments:
Post a Comment