Tracey recently had her lung function tested to see how her result compared with someone with Cystic Fibrosis to highlight the devastating impact of the disease for Cystic Fibrosis Week 2012.
The event indicated firsthand 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. Tracey achieved 89% on the spirometry test, which is a good score.
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.
People in the South East who suffer with CF are referred to Kings College Hospital, London. In 2010 Kings Hospital were dealing with a total of 137 patients from London and the South East.
Tracey Crouch MP said:
“I was 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 know that services are suffering because of cut backs in posts vital to Cystic Fibrosis care and cut backs in beds suitable for accommodating people with Cystic Fibrosis when they need inpatient treatment.”
The Cystic Fibrosis Trust is aware of worrying trends that amount to real-time cuts to Cystic Fibrosis services. Patient care is being compromised because posts in vital disciplines – specialist nursing, physiotherapy and dietetics – are being disestablished, downgraded, left vacant or used to backfill general vacancies. We need the Government to ensure that Cystic Fibrosis services are adequately resourced and extra capacity, including beds suitable for accommodating people with Cystic Fibrosis, are provided.
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
Photographs by Georgie Scott, Cystic Fibrosis Trust.