#strawfiechallenge

#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


This video is also available at:

  • QTube (also available for direct or torrent download)
  • YouTube

Orkambi Protests, 22nd June 2018, Belfast and London

This article is a repost promoting content originally published elsewhere. See more things Dan's reposted.

Orkambi Protests, 22nd June 2018, Belfast and London (Little Fierce One)
www.youtube.com/watch This video was made to raise awareness about the campaign to make a life saving cystic fibrosis medicine available on the NHS. Please share far and wide and go to a protest in…

https://www.youtube.com/watch?v=oVCZqWu5_Lk

This video was made to raise awareness about the campaign to make a life saving cystic fibrosis medicine available on the NHS. Please share far and wide and go to a protest in Belfast or London on 22nd June if you can! Thanks to everyone who contributed to the video and huge thanks to…

Daily Physio for Cystic Fibrosis

This article is a repost promoting content originally published elsewhere. See more things Dan's reposted.

My friend Jen‘s been blogging and vlogging about cystic fibrosis – which her young son Lorcán has – in order to raise awareness of it and of a promising new treatment, Orkambi, which would very likely dramatically improve the lifespan and health of chidren like Lorcán… were it available on the NHS. For more information, including petitions you can sign, see their blog Little Fierce One.