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Cystic fibrosis – it’s literally breath taking

Cystic Fibrosis New Zealand Friday 11 August 2017, 03:33PM

Media release from Cystic Fibrosis New Zealand

Annual Cystic Fibrosis Awareness Week highlights challenging genetic disorder and the 500 resilient people in New Zealand living with it.

Cystic fibrosis is a life-limiting condition. It can limit your breathing, your digestion and your life expectancy. It’s the most common, life-threatening genetic disorder in New Zealand and one in 25 of us carry the gene that causes it.

There is currently no cure, although a lot of research is underway to ease the symptoms and improve quality of life and life expectancy of those who have it.

Despite improvements in care, there is still a long way to go before people with cystic fibrosis (CF) enjoy the same quality of life as others. This Cystic Fibrosis Awareness Week, Cystic Fibrosis New Zealand (CFNZ) is seeking increased awareness and support for the community through donations and volunteers.

During the week there will be number events being held around the country that aim to raise awareness about this debilitating condition and funds for the continuation of the services CFNZ provides. CFNZ is the only organisation dedicated to supporting CF families in New Zealand.

Major sponsor Choice Hotels is hosting a campaign ‘to help those living with cystic fibrosis become invincible’ by donating $2 from every night stayed its participating New Zealand properties during CF Awareness Week. The chain has over 25 hotels across New Zealand including Ascend Hotel Collection, Clarion, Quality, Comfort and Econo Lodge.

CFNZ Chief Executive Jane Bollard is thankful for all the assistance CFNZ receives from businesses, individuals and volunteers that help provide the ongoing support for the CF community.

“Funds raised help us to continue our services, such as contributing to research, providing education, information, advocacy, and essential medical equipment that are not always funded by the government. Our social workers support people with CF and their families throughout their lives – right from when a new baby is diagnosed,” Jane says.

“Children and adults need physiotherapy twice a day, a lot of medication - often using nebulisers which can take 40 minutes a day. This is exhausting for already busy families,” she says. “We’d love to make their lives easier by getting them access to equipment and medication that is routinely available overseas.”

More information and ways to donate can be found on cfnz.org.nz and Facebook /CysticFibrosisNZ.

 

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