This picture of me taking the #StrawfieChallengemay look silly, but the reason for doing it is very serious. For many of the 10,400 people in the UK who have cystic fibrosis, this is how they are forced to start their day –battling for every breath.
5 year old Ivy – who has cystic fibrosis herself – came up with this campaign to raise awareness of the challenges of living with this life-limiting condition, after someone talking to her described her condition as like ‘having your mouth forced shut, your nose covered and your only way to breathe through a straw.’
There is a drug called Orkambi which is able to relieve many of the symptoms and greatly improve the standard of living for around 50% of those who live with cystic fibrosis, but it is currently unavailable to them on the NHS due to arguments around its cost effectiveness. On behalf of Ivy, my own niece Maisie, a number of my constituents, and all those living with cystic fibrosis, I will continue to work with my parliamentary colleagues to campaign for them to be given timely access to new life-changing treatments.
To learn more about cystic fibrosis, make a donation to this important cause, or find out how to take part in the #StrawfieChallenge, visitwww.breathwithme.org