‘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.’