Cystic Fibrosis - the ‘invisible’ illness

Cystic fibrosis (CF) is New Zealand’s most common life-threatening genetic disorder that affects breathing and digestion. It leads to the lungs and digestive system becoming blocked with mucus which can cause chronic lung infections and problems with weight gain and malnutrition.

There is currently no cure, however advancements in medications are giving hope to those with CF and their families.

Kelly Oliver deals with the ‘invisible illness’ every day, and now she wants to help kids who share a similar fate. The 35-year-old Hamilton woman has cystic fibrosis but admits she’s one of the lucky ones. She’s been fortunate having a lot of financial support from her parents and has equipment that helps her deal with daily tasks.

Kelly has to use her nebuliser twice a day for 40 minutes in the morning and around half an hour at night. Hers is portable, allowing her to slip it into her pocket so she can carry on with things.

“I can hang the washing out, get my daughter up for school, get her out of bed. Whereas children being treated in the public system would most likely be using a wall nebuliser.”

In Kelly’s opinion, nebulisers are “old, loud, slow, [and] power sourced. If a kid was stuck with one on the wall you are probably looking at around two hours. And you have to have noise-cancelling headphones on because they are quite noisy.”

Kelly said there are a lot of families that can’t afford the portable nebulisers. She believes they cost around $1200 and have a life span of about five years. Extra gadgets such as filters swallow another $150 every two months.

“I know a lot of the families might not be able to afford them, they are expensive and the government won’t fund them as the other machine does the job.”

Kelly decided to help out her fellow sufferers by hosting ‘Breathing LIFE a fundraising night.’ might need to feed their kids more. Some might not live in warm houses and need heating.

“After I started digging I realised we need lots and lots of money.”

Initially hoping to raise $15,000, Kelly ended up raising $27,000 from the event held on 17 September.

One in 25 people will carry the CF gene, which makes it the most common life-threatening genetic condition affecting New Zealand children. There are 568 people in NZ with CF, 42 of whom live in Waikato. The average age of someone with CF is 37.

“It’s called the invisible illness. Quite often people don’t know you are sick, even when I am sick I might be a bit pale, I still look normal, it’s all internal.”

Often CF sufferers are dealing with other complications of the disease - they are susceptible to asthma and diabetes because their pancreas doesn’t work properly. They often have sinus problems which require operations. Kelly admits now is a good time to have CF as there are a number of drugs coming through.

“But we need to get them into the country first, but they’re also hellishly expensive.”

Kelly’s drugs are funded but it costs between $2000 to $2500 a week to keep her alive.

She admits medication has come a long way, but New Zealand is so far behind “it’s not funny”.

“The DNA drugs are expensive, they’re $650 a packet, and I need around two a week. And the new gene drug that is coming in the States is $500,000 per person, per year.”

Kelly is currently campaigning with other New Zealander’s with CF to get access to life-saving medications such as Trikafta, Orkambi and Symdeko that are available in other OECD countries, but not currently funded in New Zealand. See cfnz.org.nz for more information.

This article was reproduced with permission from stuff.co.nz. Article credit: Jo Lines-MacKenzie. Photos: Christel Yardley.