North Geelong mum Hayley Boyce shares experience of living with cystic fibrosis
When Hayley Boyce was a child, she was told she wouldn’t live to adulthood because of her cystic fibrosis. Now 46, she is sharing her story for the first time.
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When she was a child, cystic fibrosis patient Hayley Boyce was told she wouldn’t live through her teenage years.
Now 46, she has not only beaten those odds, but has gone on to do things labelled too dangerous for someone with cystic fibrosis, including travelling and having children.
Cystic fibrosis is a genetic disease resulting from a mutation in a gene that mostly affects the lungs and digestive system.
One in every 2500 babies born in Australia has cystic fibrosis, with the median life expectancy about 47 years old.
Symptoms include chronic coughing, frequent lung infections, inflammation of the pancreas, salty and sweaty skin, and fertility problems among others.
Cystic fibrosis cannot be cured, but can be managed with medications and physiotherapy.
Ms Boyce said the complex condition was different for everyone, counting herself as lucky to have a milder case.
Even with this, she said she takes “countless” medications and does daily physiotherapy as self-management, with support from a specialist team.
Ms Boyce was diagnosed when she was two and said she had a relatively healthy childhood.
“But as a teenager, it was something that I was always embarrassed about, so I didn’t tell a lot of people because I was embarrassed by the symptoms,” she said.
Ms Boyce said the major symptom was “incessant” coughing, common to people living with the disease.
“You’re constantly bringing up mucus, which you need to do to clear your airways,” she said.
“That was something I was always really embarrassed by because it was so obvious.”
Ms Boyce said her first pregnancy at age 30 was when her condition deteriorated and she lost some lung function.
She said with her second pregnancy at 37, her health deteriorated further and she had three bouts of hospital admissions.
She then learned about gene therapy, which she started once stopping breastfeeding. This would reduce the need for regular, two-week “tune ups” in hospital.
For about a year now she has been on the drug Trikafta to improve her lung function.
It was added to the PBS last year, and costs about $40 per script – without the PBS it would cost more than $250,000 annually.
Ms Boyce said it had been a “game-changer”.
“I feel more positive about the future,” she said.
“As a teenager, the harsh reality of having CF was like a lingering dark cloud.
“Knowing that my health would eventually decline and I may never travel, marry or have children.
“Premature death was more likely.”
However, Ms Boyce said cystic fibrosis management had changed for the better over her lifetime.
She said events like Cystic Fibrosis Geelong’s gala ball fundraiser were important for raising awareness and vital funds.
She said the outpouring of financial support was “overwhelming”.
The annual event will take place on June 17, and while tickets are sold out, donations and raffle ticket purchases can still be made.
To donate, visit geelongcysticfibrosis.com/
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Originally published as North Geelong mum Hayley Boyce shares experience of living with cystic fibrosis
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