World-first NZ research could offer hope of saving dozens of lives each year from the potentially lethal heart condition that left former Black Cap Chris Cairns paralysed.
This winter alone, surgeons have operated on about 40 patients with aortic dissections in Auckland and Waikato. An aortic dissection is a life-threatening injury from a tear in the lining of the body's largest blood vessel.
Half of the people who develop the condition die before they get to hospital. Of those who make it to hospital, another 50 per cent don't survive.
Even those who do pull through often suffer a stroke during the surgery and can be left with lasting damage. Cairns remains paralysed with a "long road to recovery" after he collapsed in Canberra in August due to major heart attack which resulted in an aortic dissection.
The 51-year-old had a stroke in his spine during his operation and became paralysed in his legs. He's now undertaking a significant rehabilitation process at a specialist spinal hospital in Australia.
Experts say people are dying and suffering unnecessarily because the condition has been under-researched for decades.
But a Waikato heart surgeon, an aortic dissection survivor and a University of Auckland researcher plan to turn that around.
Professor Julian Paton, director of Manaaki Manawa, the Centre for Heart Research, and Waikato Hospital cardiothoracic surgeon Dr Nishith Patel are developing a blood test that would allow doctors to pick up the aortic dissections faster.
The pair also plan to investigate hypertension (high blood pressure) in patients and how best to manage it.
Within the next six months, a New Zealand wide aortic registry will be set up to understand the prevalence of aortic dissection.
Paton said this research could make a huge difference in a relatively short period of time - he expected it would take four to five years.
"It's not an overnight project but given the fact Nishith will have a registry he's going to have access to the specific patient population he needs, which is significant."
Patel said patients were often frustrated at the delay to pick up the aortic dissection, which could be a matter of life or death.
"Aortic dissections were often a result of high blood pressure or a pre-existing genetic disease but there were still so many unknowns as it had remained significantly under-researched for decades," Patel said.
Having moved to New Zealand from the UK about a year ago, Patel said aortic dissections seemed more common here and he wasn't sure why.
"This winter was one of the biggest hits of aortic dissection, at one point we were operating on one every other day and that is a lot."
Patel said aortic dissections were such a devastating condition with a very high mortality and morbidity.
"Often patients were young with children, I see people losing wives, husbands, mothers, fathers."
The research project has been made possible due to funding from John Burton who was playing hockey when got a stabbing pain in his chest.
The then 29-year-old contacted his GP who told him he was too young to have a heart attack.
A couple of days later, still in pain, he went back to his doctor who instructed him to get an X-ray, which found his heart was enlarged. It wasn't until another two days later doctors found the aortic dissection.
"I was extremely lucky that it held together and I didn't die," Burton, now 65, said.
He discovered he had a genetic condition called Marfan's Syndrome which meant he was prone to getting aortic dissections.
"I had no idea I had it or that any of my family had it."
When he was 40 Burton had another aortic dissection - only this time he woke up from surgery paralysed.
"My children were 5 and 3 at the time, my daughter had just had her first day of school ... It was terrifying at the time," he said.
Determined to prevent others from the same suffering, including his daughter and grandchild who also have Marfan's, Burton is funding University of Auckland research to uncover more about aortic dissections.
Patel said for the patients who had strokes or become paraplegic it changed their whole family culture because they needed a lot of healthcare.
"The other thing is these patients need a significant amount of health resource and remain in hospital for a long time and need scans every year.
"This is a big cost so anything we can do to improve the outcome for these patients the effects would be beneficial to families, to them and to the healthcare system," Patel said.
About aortic dissections
•An aortic dissection is a life-threatening condition resulting from a tear in the lining of aorta (the large vessel that carries oxygenated blood from your heart to the rest of your body).
Blood rushes through the tear, causing the inner and middle layers of the aorta to split (dissect). If the blood goes through the outside aortic wall, aortic dissection is often deadly.
• It's unknown how common the condition is in New Zealand. In the UK, it affects about six in 100,000 people. Anecdotally researchers predict it's more prevalent in NZ.
• 70 per cent of patients who develop aortic dissection are male, usually between 50 and 70 years old, but researchers said it also seemed common in young and more so in Māori and Pacific peoples.
• It has a very high death rate; 50 per cent of patients die before reaching hospital and for those who survive to hospital the mortality rate is a further 50 per cent.
• Research is needed to better understand the prevalence in NZ, speed up diagnosis, and address underlying causes, particularly high blood pressure. Philanthropic funding is needed to keep the research going. To donate click here.