On Wednesday I went to an event in parliament to support Cystic Fibrosis Week, which runs from the 29th of April to the 5th of May.
More information about Cystic Fibrosis Week, can be found at www.cfweek.org.uk
The event was organised by the Cystic Fibrosis Trust. I had my lung capacity measured, and scored 94%, which is a good score. A healthy person should score at least 80%. The average score for an adult suffering with Cystic Fibrosis is 65.1%, which shows to what extent the lung function deteriorates under 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.
Despite Cystic Fibrosis being a progressive disease with the average age of death for a sufferer being 29 years, because of advances in treatment and access to clinical expertise, many people with CF are living longer than ever before.
The CF Trust also lobbied to ensure that CF services were protected as much as possible from funding cuts. They argue that 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.
The event gave me a better understand of the problems faced by CF sufferers, and the wonderful work done by the Cystic Fibrosis Trust to raise awareness of CF, and fight for a better deal for Cystic Fibrosis sufferers.