By Jason Gurney
‘Not knowing if your dad will live through the night is not something that any young son or daughter should ever have to endure. I experienced this nightmare more times than I care to remember.’
In the winter of 1969, a 14-year-old Whangārei schoolboy called Keg went to a weekend rugby tournament and came home with a sore throat. Soon he was bedbound with a blazing fever, painful wrists, elbows and knees, and – most worrying of all – damage to his heart. He had been diagnosed with rheumatic fever, and his life was changed forever.
Rheumatic fever is an inflammatory autoimmune disease, usually contracted in childhood. It starts with a sore throat; left untreated it can cause serious, life-long damage to the heart. Despite its status as a developed country, Aotearoa New Zealand has one of the highest rates of rheumatic fever in the world. More than 90 percent of the country’s cases occur in Māori and Pasifika communities.
Author and researcher Jason Gurney knows Keg’s story intimately; he is Keg’s son. In The Twisted Chain, Gurney describes living in the long shadow cast by this disease. He writes of emergency night-time drives to Auckland’s Middlemore Hospital, of panicky hours waiting for medical help. He describes how these frighteningly vulnerable experiences sparked some of the questions that led him to a career in public health. ‘I wanted,’ he writes, ‘to research the causes and effects of rheumatic fever. It was my way of fighting back against the illness that had changed the trajectory of my family’s life.’
The Twisted Chain chronicles the profound impact of rheumatic fever on individuals and whānau and critiques the socio-political decisions (or lack thereof) that enable this preventable disease to thrive in modern-day Aotearoa New Zealand. It’s a vital read and an urgent call for action because, as Gurney reminds us:
‘Whenever anyone contracts rheumatic fever, it changes their life forever, as well as the lives of all who love them.’
'Woven of memoir, science and history, The Twisted Chain stands with the best in its genre. Storytelling has the power to change the world, and this is one of those stories.' — Emma Wehipeihana
'It’s a profound account of the most important things in life, of growing up, valuing whanau, having an inquisitive mind and a social conscience, and making a difference in the world, all told by Jason in a highly readable personal way. It is a book that will be treasured and should be read by all.' — Professor Michael Baker at the book launch for The Twisted Chain.
Author
Dr Jason Gurney (Ngāpuhi) is the Director of the Cancer and Chronic Conditions (C3) Research Group, and an Associate Professor in the Department of Public Health at the University of Otago (Wellington campus). He has worked in the public health sector in epidemiology for the past 15 years. In 2018 he was awarded the Health Research Council of New Zealand (HRC) Māori Emerging Leader Fellowship, and in 2023 was part of a team awarded the HRC Liley Medal for research into the causes of rheumatic fever. The Twisted Chain is his first book.
Publication details
The Twisted Chain is a part of the Ka Haea Te Ata series by Otago University Press.
Ka Haea Te Ata: books that cast light on issues of importance in Aotearoa today.
Paperback, 210 x 148mm
ISBN 9781990048791
RRP $35
Release date: 11 September 2024
Reviews and Interviews
Unity Books Wellington Bestseller Chart for the week ending 20 September Read
Interview: Jason Gurney speaks to Jack Tame about how New Zealand's ongoing housing crisis is fuelling high rates of rheumatic fever among Māori and Pacific communities on TVNZ 1 Watch
Extract: The Twisted Chain extracted for the NZ Herald Read
Interview: 'I’ve already had people who’ve read the book come out of the woodwork and say their mum or their cousin, or their uncle or brother suffered from rheumatic fever. Especially in Māori and Pacific populations, it’s a disease that connects us. It connects us because 90 percent of rheumatic fever cases in New Zealand are among Māori and Pacific people. It’s a uniquely Māori and Pacific disease in Aotearoa today.' – Jason Gurney speaks to Dale Husband for E-Tangata Read
Interview: 'On the final page of The Twisted Chain, author Dr Jason Gurney (Ngapuhi) makes one last acknowledgement … to those who will be diagnosed tomorrow with a disease that could have been eradicated yesterday.' – Jason Gurney speaks to Mahurangi Matters Read
Review: 'In his first book, Jason Gurney does a remarkable job of weaving his own family story with the story of rheumatic fever prevention and control in Aotearoa ... This book is essential reading for healthcare workers in Aotearoa, and for anyone interested in the history of infectious diseases and the connection between politics and health. Through Keg’s story, Gurney demonstrates the power of lived experience. Stories can help us understand the problem and the science and create a stronger case for action.' – Rachel Webb reviews for Kete Books Read
Interview: Jason Gurney speaks to Kathryn Ryan on Nine to Noon, RNZ Listen