Cystic Fibrosis NZ

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1. CFNZ will optimise quality of life for people with cystic fibrosis and their families – striving for normal life expectancy. Registered Charity # CC10274
2. New Zealand’s most common genetic disease 1 in 25 people carry the gene – if both parents are carriers there is a 1 in 4 chance of a CF baby in every pregnancy 430 people in NZ have CF CF is a life shortening disease
3. Today - the Guthrie Heel Prick Test will diagnosis CF. The bad old days – relied on a the infants ‘failure to thrive’.
4. Pills with EVERY meal (up to 15,000 pills a year). Half an hour of physiotherapy twice a day, morning and night. 40 minutes morning and night of nebulised medications. A person with CF must eat 3,500 calories every day (150% of the calories you and I need). Hospital specialists four times per year for numerous testing. A shortened lifespan
5. CF Related Diabetes Depression and anxiety Fertility Issues: reproductive options Lung Transplant Gastro-oesophageal reflux Liver disease Complications of antibiotic use, e.g. kidney disease, hearing loss Sinus – polyps Osteoporosis
6. High quality and accessible healthcare High functioning service organisation
7. Financial assistance – welfare grants/ exercise equipment Equipment – Nebulisers are a must have and CFNZ fund these Education Counselling Lobbying Research Lifelong support
8. More Kiwi’s becoming organ donors More Government Funding Awareness of this genetic condition – 1 in 25 carry the gene!