Living life with cystic fibrosis
There’s pros and cons to having cystic fibrosis, according to Raupunawaiariki Griffiths.
And the 16-year-old would know; she’s had it all her life.
‘‘Because of how my digestive system is, basically I get to eat a lot of fatty foods, things like a big roast and the greasy chips,’’ she said.
‘‘All the things with the good oils and the good fats that I’m allowed to eat that other people try to avoid.’’
Sitting on a bed in Taranaki Base Hospital as a machine slowly pumped antibiotics to fight an infection, the bubbly and cheerful Griffiths explained the effects of a condition experienced by 500 New Zealanders, although one in 25 people carry the gene that causes it.
The illness affects the lungs and digestion and Griffiths’ case is even more rare than others as she also has CF diabetes as well.
The mucus in the lungs created by CF traps bacteria which can result in chronic infections, while in the digestive system it reduces the amount of insulin produced and stops the digestive enzymes that aid digestion.
‘‘Throughout my life I’ve had to take artificial enzymes, they’re called Creon or pancreatic, I think.
‘‘Basically it’s like an artificial acid to digest my food so I can eat.’’
Griffiths was diagnosed with CF at birth, with a heal prick that is standard procedure for newborns.
‘‘I’m very lucky to be honest to be born in this day and age,’’ she said.
‘‘There were people 30 years that they didn’t find out they had CF until later on in their life until there was something critically wrong with them.’’
She said her mum had told her they were shocked at the news, as neither of them knew they carried the gene. ‘‘But my mum’s awesome as well as my dad, they’ve helped me through it incredibly well,’’ she said.
‘‘From my dad getting up at like 4am just to heat the living room up so I had somewhere warm to do my nebulisers, to my mum and dad weighing out my food so they knew exactly how many Creon I had to take when I had my lunch at school,’’ she said.
‘‘They’ve been awesome throughout my young life.’’
Because Griffiths had been in hospital so many times, she recently had portacath, a device that allows doctors easy access to her veins, installed in her chest as the numerous injections in her arms were taking a toll.
From Monday, August 14, multiple events will be taking place around the country to raise funds for cystic fibrosis New Zealand as part of Cystic Fibrosis Week.
For Griffiths, one of the hardest parts of the condition was waiting to see if her younger sister would be born with it too, as two people with the condition aren’t allowed near each other as their lungs harbour specific bacteria that is a risk.
‘‘My sister is very lucky where she’s in the percent where she’s not even a carrier,’’ Griffiths said.
‘‘I don’t know where I would be without my little sister. She’s only like seven but she’s a smart little chickey.’’