Imagine feeling too tired to breathe - that's the reality for hundreds of Australians living with severe asthma despite the medical advances in treatment.
Asthma is a chronic inflammatory disease of the airways of the lungs and effects one in 10 Australians, or 2.4 million people.
For most they live normal lives thanks to a daily single puff from a anti-inflammatory inhaler.
But for five to 10 per cent of sufferers this isn't enough and their severe asthma holds them back from living normal lives.
"For some people their asthma is truly burdensome, it dominates their life," said Professor Helen Reddel from the Woolcock Institute of Medical Research at the University of Sydney.
A new study led by Prof Reddel, in partnership with Asthma Australia, has highlighted the devastating impact of severe asthma and led to a call for better care for this subset of asthmatics.
The Severe Asthma - Uncovering the Reality study found almost all of the 25 study participants with severe olfactory asthma, aged 23 to 81, suffer daily from shortness of breath, wheezing and cough.
Poor sleep because of frequent waking at night, headaches and weak legs are other common complaints.
Some are unable to talk in full sentences or even walk to the end of their street.
They have a burden of symptoms that interferes with their social life, their work life and parenting abilities, said Prof Redell.
"I don't think I've actually had a full day feeling capable of just doing things, like showers, for a year and-a-half," said 48-year-old study participant Casey.
It also affects their mental health, with the majority of participants reporting frequent feelings of frustration, low mood and hopelessness.
"You know, there's things I really wanted to do and I just haven't been able to do it. It does make you depressed, because people look at me and they don't see the sickness that has happened over my life," said Brenda, a 53-year-old sufferer from Victoria.
Unfortunately many health professional aren't fully aware of how debilitating severe asthma can be.
Many participants of the study said their need for more emotional support was rarely discussed with their GPs and specialists.
Asthma Australia CEO Mark Brooke says the study shows a co-ordinated approach is needed to improve care.
"It is unacceptable that people with severe asthma and their families are struggling with this burden every day," he said.
