65 Roses

I’m 36 and I’ve got a little cold.

It’s just a little sniffle...

Bit of a headache...

It’s nothing a panadol and a good sleep won’t fix.

So, sitting here whinging about my sniffle

I’ve been reading about Cystic Fibrosis.

It’s the most common life threatening,

recessive genetic condition

affecting Aussie kids. 

Cystic Fibrosis (CF) is a recessive genetic condition. The gene involved in CF gives instructions for the cells to make a protein that controls the movement of salt in and out of cells.

This salt transport gene lies on chromosome 7. Everyone has two copies of chromosome 7 and therefore everyone has two copies of the salt transport gene. Scientists have called it the CFTR (Cystic Fibrosis Transmembrane Regulator) gene.

The disease mostly affects the lungs and pancreas, clogging them with thick, sticky mucus.  (And I’m worried about a sniffle!)  After repeated infections and blockages, there is irreversible lung damage – which results in death.  There’s no cure at the moment.

Even with today’s advances and research,

at least 30% of teenagers with CF pass away. 

When the disease was first discovered

in the 1930s, most babies

born with cystic fibrosis died.  

By the 1980s, life expectancy was 17.   

Now, it’s 37. 

Most people with the disease are

living into their thirties and forties. 

(Makes me realise how lucky I am. 

At 36, if I had cystic fibrosis,

my own future would not be very bright.)

65 Roses is a National Awareness and

Fundraising Day for cystic fibrosis. 

So, why 65 Roses? 

It’s a cool story. 

A little boy’s big sister had cystic fibrosis. 

It was a tricky name to pronounce,

so, he called it 65 roses.

Info from  here & here & here