WHY IT MATTERS

Ali on a good day - a bungee jump, in his words 'the best thing he ever did.'

If you met a cystic fibrosis sufferer on a good day,
you probably wouldn’t realise there was anything wrong.

You wouldn’t know they have to take a cocktail of drugs & handfuls of tablets every day, just to stay alive.

You wouldn’t know they have to do chest physiotherapy and use nebulisers twice a day, every day, to reduce the mucus in their lungs and minimise the risk of damaging infections.

You wouldn’t know they often have to be admitted to hospital for intensive antibiotic therapy, and that the frequency and length of these hospital stays increases over time.

You wouldn’t know they may have a port embedded in their chest, ready for this intensive antibiotic therapy.

You wouldn’t know they may have a feeding tube in their stomach for overnight feeding to reach the 4000 calorie a day required for their best outlook.

You wouldn’t know they may need to sleep hooked up to an oxygen tank every night.

You wouldn't know they have to fight nausea and fatigue everyday.

You wouldn’t know this disease impacts the whole body, not just the lungs, and that typically the digestion, liver and pancreas are all seriously impacted too.

You wouldn’t know there's only a 50/50 chance they'll reach 45 years of age.

We know differently.  We know how difficult life with cystic fibrosis can be. But we also know that CF doesn't have to be a barrier to fun, learning and adventure, and that sufferers deserve all the help they can get.