THORNLIE resident Sally Edwards is one of just a handful of people in the state who were diagnosed with cystic fibrosis as an adult.
She had known she was a carrier of cystic fibrosis since she was 28, but it took until she was 34 for her suspicions to be confirmed.
“I was already in the cystic fibrosis clinic by then, so they said they would try to find another gene mutation and they found one,” she said.
“A rare one, a milder one, which is why I’d gone so many years without diagnosis.
“Currently I have 45 per cent lung function and that’s dropped probably 10 per cent in the last five years.”
Despite having to alter her lifestyle to combat the disease, she said she would not change any of it.
“So much good has come from it with the lifestyle changes I’ve made; it’s bought a lot of good into my life,” she said.
“My body would be physically healthier now than it’s ever been because I make a real effort to keep it healthy.”
Ms Edwards said while the diagnosis was expected, hearing the news helped her come to grips with the disease.
“Once you know what’s wrong with you, you can start learning about it” she said.
“Before diagnosis, I was getting sick a lot, getting a lot of chest infections.
“Because I didn’t know what was wrong with me, I didn’t really know how to look after myself properly, so I was not living my life. I didn’t know back then I need to exercise every day to keep my lungs healthy.”
Ms Edwards will be volunteering in Perth on May 26 for 65 Roses Day to raise money and awareness for cystic fibrosis. She said her involvement with Cystic Fibrosis WA made her want to help raise awareness about how it felt to live with the condition.
“It’s one of those conditions where there’s no respite. You have good days and then times when you get sick and you might be able to fight it off or you might end up in hospital because your body is just not capable of fighting it off,” she said.