Dan Q (scatmania) wrote,
Dan Q
scatmania

#strawfiechallenge

Read the full post and see the video at: https://danq.me/2019/02/07/strawfiechallenge/

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#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

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My video is also available at:

QTube (also available for direct or torrent download)
YouTube
Tags: #orkambinow, #strawfiechallenge, cystic fibrosis, health, video
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