Cystic Fibrosis… moving stats

Normally I like stats… But here’s some I’m not so keen on that I learned this evening…

  • 31 years old is the average life expectancy of someone with Cystic Fibrosis.
  • 1.5 hours is how long even some relatively healthy CF sufferers take each morning to go through their medication.
  • 1 in 25 people carry the gene that causes CF, but both parents must have it for a child to get it.
  • 1 in 4 are the odds of a child getting CF if both parents have the gene.
  • 8,000 people in the UK have it.
  • 5 babies are born in the UK with it each week.

Sadly my brain retains such numbers, and I learned these while listening to some of the inspirational and moving stories at the Cystic Fibrosis Breathing Life awards. The MSF was invited and I was her plus one.

A little bit of info on Cystic Fibrosis

It’s a genetic illness which causes the lungs to misperform and produce damaging debilitating excess phlegm. This can make breathing difficult, require a vast range of medication, and lead to varied and repeated lung infections. In serious cases lung transplants are required and, as one girl at the awards needed, a permanent oxygen supply delivered via the nose 24-7.

Frankly I was pretty ignorant about CF beforehand

While I remember from my pre-teen years that a friend of my family’s daughter suffered from CF and needed home treatment, that was about it. Yet tonight my eyes were opened about the illness. The message that sang out was of bright, ambitious people knowing they’ve a short life expectancy and thus trying to live each moment of life to the full.

A story of frustration…

While not brought up in great detail in the awards, which are being shown on the TV (Sky Real Lives on Sunday) and thus are trying to publicise CF and be inspiring and educative, a note I read in the programme about one of the awards recipients was a bit frustrating.

One young footballer, who’d already played for Wales under 16 was given a contract with a second division football team. It’s important to understand that for people with CF, doing as much exercise as possible and going through physio is crucial to staying healthy and battling back the symptoms and it keeps the lungs working.

Yet even though he’d never been off sick, never missed a match, and worked very hard, the club decided it couldn’t risk keeping him on the books due to his illness. What a shame. He’s 18 now and going to play for Wales under-18 soon… perhaps another football club will be more progressive in the future.

A quick hello to the people on our table

The MSF and I were sitting on a table which was a part of a three-table family tribe from near Wapping. They were huge supporters of the Trust as two young children in the family have CF.

We were made to feel very welcome (and one of the men on the table was a big MoneySaver who’d helped the rest sort their bills too!). The last thing he said to me before we left was ‘do what you can to support the charity and let people know about CF and its symptoms’. Which is exactly why I’ve written this blog…

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PS. Check out the Cystic Fibrosis Trust website.