An asthma attack took Thea Notaras' life two weeks before her 17th birthday. Now her father is working to save others from her fate.
After the death of his wife, John Notaras kept such a careful eye on his two daughters that his eldest, Thea, used to call him “Mother Hen”. Thea was nine and her sister Melanie eight when their mother died, leaving their father alone to care for them. He was particularly protective of Thea because she suffered from severe asthma, which seemed to grow worse after her mother was gone.
Thea’s respiratory arrests would leave her blue from lack of breath. On at least 20 occasions, her father saved her life with mouth-to-mouth resuscitation. “But then,” he says, “on the 21st time, I wasn’t there.”
Thea Notaras died on 10 September 1988, two weeks shy of her 17th birthday. She had an asthma attack while out with friends. Her father had asked her that morning if she had checked her peak flow meter, a handheld device asthmatics use to monitor their condition by measuring airflow from the lungs. “She said, ‘yeah, yeah’ and off she went,” he says, remembering the day.
When Thea came home feeling unwell, there was no-one else in the house. By the time her sister came home and called an ambulance, it was too late.
Asthma kills approximately 400 people in Australia every year. Of those deaths, more than two-thirds could be prevented with treatment and care.
Notaras hopes to help shield others from the kind of tragedy he has endured. He has donated $335,000 to support asthma research at the University of Sydney and the Woolcock Institute of Medical Research. His gift is funding a clinical trial of technology that could save lives by warning asthma sufferers of imminent flare-ups.
Others are supporting the University's asthma research through a crowdfunding campaign. On 17 September, we acknowledged the donors who support research and education with the University's inaugural Thank You Day.
When it comes to asthma we are still walking around in the dark ages. We need a major change in the way we manage the illness.
The donor-funded study, led by Professor Greg King and Associate Professor Cindy Thamrin, has seen 53 people with asthma testing a new use-at-home device to monitor lung function. As patients breathe into a mouthpiece, gentle soundwaves probe their lungs – a technique called “forced oscillation”. The results are available to patients and their doctors via digital technology, so they can track lung function day to day.
The trial aims to demonstrate the device’s accuracy in predicting attacks. King believes it could transform medicine’s approach to the disease.
“When it comes to asthma we are still walking around in the dark ages,” he says. “We are still using crude measurements we’ve had since the 1940s. We need a major change in the way we manage the illness.”
Existing “crude” measurement techniques include the peak flow meter – the tool Thea Notaras used to monitor her asthma. While peak flow measurements can be useful, they can also be difficult to interpret – even for doctors, if they do not regularly use the technique.
Many patients also find the peak flow test, which requires strong outward breaths, difficult and tiring to perform. These barriers mean peak flow recordings are infrequently used to manage asthma. Many doctors and patients prefer to base treatment decisions on symptoms, such as wheezing and breathlessness. While this strategy works for some, symptoms can be deceptive and vary between individuals.
The new device provides an easier way for patients to test their own lung function at home, potentially identifying when their asthma is well controlled, when it changes or becomes unstable.
The device is in the early stages of development and testing, but there is technology available to transfer the data it records directly to healthcare providers. All of this is in stark contrast to current approaches to asthma, which favour symptoms over objective measurements.
Trial participant Amy Webster has suffered from severe asthma since she was a child. Many times when she has been hospitalised, battling for every breath, she has been asked to do a peak flow test.
“When I’m really unwell, I just can’t,” she says. “Peak flow requires quite a strong breath out. It can make you feel dizzy. It’s always a bit of a drag, and when you’re not feeling well, it’s very hard to do.”
During the trial, she used the forced oscillation device every morning, sitting at a table in her Terrey Hills home, breathing gently into the mouthpiece for a couple of minutes. That’s all it took for the device to take a daily measure of her lung function and send the data to King and his research team.
“It’s a bit of a gamechanger,” she says. “Up to now, there really hasn’t been a reliable way to have an objective measure of the condition of your lungs. And the thing about asthma flare-ups is, if you can catch them early, you can start treatment and reduce their severity and duration. I definitely think this technology could save lives.”
King and his team are working with Italian engineers to make the device smaller. He envisages a day when the machine – now the size of a basketball – is a compact, handheld device that connects to a patient’s smartphone, sending daily data to their doctor and guiding treatment decisions that will help prevent attacks.
If Thea Notaras were alive today, she would be 47 years old. Her father still thinks about her every day. “At my stage in life, I can afford to make a contribution after many years of hard work,” Notaras says. “I’ve always wanted to do something against this dreadful disease.”
On 17 September, we celebrated University donors with Thank You Day. See how our donors are changing the world.