- April 26, 2011
- Posted by: Mark Drakeford AM
- Category: Press Release
Cardiff West AM Mark Drakeford had their lung function tested to see how their result compared with someone with Cystic Fibrosis to highlight the devastating impact of the disease for Cystic Fibrosis Week 2012.
The event, held on 26 April organised by the Cystic Fibrosis Trust, indicated to assembly members first hand how Cystic Fibrosis damages the lungs. The average lung capacity for an adult with Cystic Fibrosis is just 65.1% compared to someone without Cystic Fibrosis that would achieve results of 80% or more. Mark Drakeford AM achieved 88% on their spirometry test coming in 6th place amongst fellow AMs.
Cystic Fibrosis is a progressive disease with the average age of death for a person with CF of around 29 years old. Despite this, because of advances in treatment and access to clinical expertise, many people with CF are living longer than ever before.
Mark Drakeford AM said:
“I am delighted to attend the event to show my support for the Cystic Fibrosis Trust. Having my lung function tested has shown me how much more effort people with CF have to make just to take a breath. I can see how arduous the burden of treatment is to try to stop lung function from declining. It highlighted to me just what a battle it is living with this condition that claims two young lives a week. I hope as many people as possible take part in an event in their area during CF Week to help to raise awareness and fundraise for research and support for CF”.
Cystic Fibrosis is one of the UK’s most common inherited conditions, affecting over 9,000 babies, children and adults. CF is caused by a faulty gene that causes the lungs, digestive system and pancreas clogging them with a thick sticky mucus.
Claire Francis, Policy and Public Affairs Manager at the CF Trust said:
“Cystic Fibrosis is a disease that is difficult to comprehend as people with the condition can look healthy and active. Through our events for Cystic Fibrosis Week we hope to show politicians how the disease effects the body and how important daily treatment and expert care is to help people live longer lives and improve their quality of life.
“People with Cystic Fibrosis don’t get a second chance once the damage is done. Providing the best quality of care is crucial to maintaining lung function. We can’t let NHS cuts have a negative impact on people with CF”.
The Cystic Fibrosis Trust is aware of worrying trends that amount to real-time cuts to Cystic Fibrosis services across England and Wales – to specialist nursing, physiotherapy and dietetics – that risk stalling the amazing progress that has been made. To ensure that people with Cystic Fibrosis have access to treatments and clinical expertise throughout their lives to prevent lung damage we are calling on the Coalition Government to keep their promise on frontline NHS services and to stop any cuts to Cystic Fibrosis care.
More information about Cystic Fibrosis Week, which runs from 29 April to 5 May and events going on can be found at www.cfweek.org.uk