#strawfiechallenge - 1 minute of simulated breathing difficulty in recognition of sufferers of cystis fibrosis
Today I'm attaching a clothes peg to my nose and breathing through a straw for 60 seconds. As I won't be able to talk while I'm doing this, I'll type an explanation why:
Like most people, I've spent most of my life lucky enough to not really know anything about cystic fibrosis. I first really became aware of it when my friend Jen's son Lorcán was diagnosed with it (you may remember I shared a video of hers previously).
It's a lifelong disorder with no known cure.
It's a genetic disorder, and as many as one in every 25 people carries the gene that can cause it. Inherit two genes and you're a sufferer. Among other symptoms, it causes frequent lung infections and difficulty breathing.
I'm taking part in the #strawfiechallenge as an exercise in appreciating how difficult it can be to cope with reduced lung function. A new drug, Orkambi, is helping to extend the lives of sufferers in other countries around the world. But it's not yet available in the UK. :-(
CF sufferers want #OrkambiNow. They need your politicians to act.
Find out how you can help: www.cfsupportgroup.org
My video is also available at:
QTube (also available for direct or torrent download)