Living with cystic fibrosis

May 12, 2024 BY

Ella Baxter is one of 3,500 Australians living with cystic fibrosis. Photo: SUPPLIED.

May is Cystic Fibrosis Awareness month, drawing attention to the disease and how it affects those who experience it.

Cystic fibrosis, also commonly referred to as CF, is a disease that people are born with. Presently, there is no cure.

It makes mucus in the body become thick and sticky, causing a buildup in the lungs which then traps bacteria, leading to repeated lung infections.

However, the disease is multi-faceted and can cause issues with the pancreases, liver and intestines.

Leann Tremul is the committee chair of Cystic Fibrosis Geelong and also has a daughter with the disease.

“In the past couple of years, we’ve had some really amazing breakthroughs with cystic fibrosis treatments,” she said.

“We’ve got some new drugs that have come on the market called modulating drugs and they work to try and correct the fault in the gene.

“They’re targeted at different genes, there’s almost 100 different genetic mutations that cause cystic fibrosis and they only target the most common genes.

“There’s 10 per cent of the population that haven’t been able to access any of these modulated drugs because they don’t have the correct genes for them.”

The new drugs unfortunately aren’t a cure, but Ms Tremul said they had made an amazing difference to a lot of

people’s lives.

For people with the disease, their lives are constantly disrupted, with time off school and work for treatment and hospital visits that can last up to 12 weeks.

“When they do get a chest infection, they can often spend a week or two in hospital and then another week on hospital in the home doing IV antibiotics.

Those with the disease often live very disrupted lives.

“The burden is quite high on those people with CF as well as their families and care givers.”

Ms Tremul said the life expectancy of somebody with the disease has increased drastically in past years.

“I think that’s pretty incredible and that’s all to do with research and that’s why it’s so important for us to keep pushing that life expectancy out with better treatments, but ultimately a cure.”

Landmarks across Victoria and New South Wales will be lit up in red on May 31, including in Geelong on the corner of Moorabool and Malop Street.

Cystic Fibrosis Geelong will host their annual gala ball on July 27, raising money to hopefully one day find a cure.

For more information, head to geelongcysticfibrosis.com