Not drowning, waving: Cystic Fibrosis Awareness Month | HerCanberra

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Not drowning, waving: Cystic Fibrosis Awareness Month

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Imagine having to take as many as 40 different capsules every day and finding it hard to breathe most days. Imagine living with the knowledge that the life expectancy of those with your condition was only 38 years. Although many people have heard of Cystic Fibrosis, many aren’t actually sure what it is. Alex Tolmie spoke to Laura Hamer, a Canberra woman living with the condition, to find out more about it and what the community can do to help.

Cystic Fibrosis (CF) is the most common life threatening genetic condition in Australia. One in every 2,500 Australians has it and a baby is born with CF every four days. It affects a number of organs in the body (especially the lungs and pancreas) by clogging them with thick, sticky mucus. In the lungs, the mucus clogs the tiny air passages and traps bacteria. Repeated infections and blockages can cause irreversible lung damage and a shortened life. The pancreas is also unable to release enzymes needed to digest food. People with CF have recurrent respiratory infections and some also experience liver disease.

Laura_and_Chris

Laura really wants to raise awareness of the condition because, she explains, it’s almost like an invisible disease.

“You can’t catch it—it’s not contagious. You’re born with it. But on the outside you look pretty normal. You look at me at you wouldn’t think there’s anything wrong with me,” says Laura.

“A good way to imagine what it’s like to have CF in your lungs is to try and breathe through a blocked straw and that’ll give you a little indication.”

The condition is managed through constant medical treatments and daily physiotherapy. A person with CF may consume up to 40 enzyme capsules daily to help digest food and may need to do up to three hours of airway clearance each day. In addition to this, is continual antibiotic therapy to treat lung infections, taking salt and vitamin supplements, eating a nutritious, high calorie, high salt, high fat diet and daily exercise to help clear the airways and build strength.

Laura_s_medicine

I mention it must be difficult to try and stay away from infectious people as much as possible, and Laura agrees. She explains that people with CF also have to stay away from others with CF because of the risk of cross-infection and exacerbation of lung conditions.

“It’s pretty isolating,” she muses. “I recently attended the Annual General Meeting for Cystic Fibrosis ACT, and there were maybe four of us there with CF. They basically had to put us in four separate corners and open all the windows. Plus when my husband gets a cold we have to sleep in separate rooms, and there’s no kissing while he’s infectious!”

In Australia, all babies are screened at birth for CF and while there is presently no cure for the condition, the responsible gene has been identified and doctors and scientists are working to find ways of repairing or replacing it. Studies have shown regular attendance at a major CF centre or clinic is beneficial because it provides access to a crack team of CF experts, including doctors, physiotherapists, dieticians, social workers and nurses. But this kind of treatment, in addition to daily medication and supplements, is expensive. This is where support organisations like Cystic Fibrosis ACT (CFACT) come in. Members of CFACT are entitled to a range of support services including financial assistance, which goes a long way towards helping people with CF live more comfortably with their condition.

CFACT relies on donations and other fundraising activities to support its vital work in providing financial and emotional support to CF sufferers.

On Sunday 26 July 2015, the 4th Annual 6,500 Santa Speedo Shuffle will be raising the festive spirit and some much needed funds for CF. Participants register in teams of up to six, don a Santa hat and speedos, and ‘shuffle’ around Lake Burley Griffin as far as they can in 65 minutes. Registration is free, but teams must raise a minimum of $2,000. Another option will be the Reindeer Dash for Cash; dash one lap of Lake Burley Griffin (dressed as a reindeer). Anyone can enter and the first five across the line each win a hamper of gift vouchers from local Canberra businesses.

Laura_running

With her lung function currently at 75 per cent (which is her best result in 10 years), Laura will be running in this event and has already set up her fundraising page. CFACT is also looking for volunteers and corporate sponsors for the event and would love to feature supportive Canberra businesses on the back of participants’ speedos.

Although living with CF must often feel like she’s drowning in mucous, Laura maintains a sunny disposition. CF used to be one of those conditions where people rarely lived past their teens. Today, thanks to advancements in research into and management of the condition, the life expectancy for many people with CF has increased to 38 years. But knowing this must be a difficult thing to live with so I ask Laura how she maintains her resilience and optimism.

“I try not to think about it, to be honest,” says Laura, “I don’t focus on the number—I live each day as it comes—and I’m doing everything I can to beat that life expectancy. I don’t ever let myself think I could only live for another 10 years, because with all of the advances in research and medicine these days, I know the life expectancy will continue to go up.”

Laura_wedding

You can help increase the life expectancy of people living with CF by donating to Cystic Fibrosis ACT and supporting the fundraising efforts of people like Laura. If you’re interested to read more of the personal stories of people living with this condition, Canadian photographer Ian Ross Pettigrew is currently creating a book, Salty Girls, to shine a positive light on some of the beautiful, brave women affected by this condition.

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