LINDA FABIANI MSP JOINS WITH THE CYSTIC FIBROSIS TRUST TO HELP RAISE AWARENESS

Linda Fabiani MSP for East Kilbride had her lung function tested to see how their result compared with someone with Cystic Fibrosis to highlight the devastating impact of the disease.

The event, held at the Scottish Parliament on 16th May organised by the Cystic Fibrosis Trust, indicated to parliamentarians 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.  Linda achieved 110% on her spirometry test coming in joint 2nd place amongst her fellow MSPs.

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.

Linda Fabiani MSP said:

“I was delighted to attend the event to show my support for the Cystic Fibrosis Trust and learn more about the work they do to support people with CF. I can see how arduous the burden of treatment is to try to stop lung function from declining and after having my own lung function tested, I can appreciate further how much more effort people with CF have to make just to take a breath. It highlighted to me just what a battle it is living with this condition that claims two young lives a week”.

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 in and around Cystic Fibrosis Week 2012 we hope to show politicians how the disease affects 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.

Indeed, the Cystic Fibrosis Trust is aware of worrying trends that amount to real-time cuts to Cystic Fibrosis services across the UK – to specialist nursing, physiotherapy and dietetics – that risk stalling the amazing progress that has been made. To ensure this doesn’t happen, we are calling on the Scottish Government to ensure Cystic Fibrosis services are adequately resourced with appropriate bed capacity suitable for people with Cystic Fibrosis”. 

Cystic Fibrosis Week, which runs each year from the end of April to 1st week in May. More information can be found at www.cfweek.org.uk

 

ENDS

 

Notes to Editors 

  • The Cystic Fibrosis Trust is the UK’s only national charity dealing with all aspects of Cystic Fibrosis (CF).  It funds research to treat and cure CF and aims to ensure appropriate clinical care and support for people with Cystic Fibrosis.
  • Cystic Fibrosis (CF) is one of the UK’s most common life-threatening inherited diseases.  It is caused by a faulty gene that controls the movement of salt and water in and out of the cells within the body.  As a result, the internal organs, especially the lungs and digestive system, become clogged with thick sticky mucus resulting in chronic infections and inflammation in the lungs and difficulty digesting food.
  • Each week five babies are born with Cystic Fibrosis and two young people die – 90% from lung damage.  The median age of survival for people with Cystic Fibrosis is 41 years old. Some may live longer, some may not, although improvements in treatments mean a baby born today is expected to live even longer.
  • The median FEV1 (% predicted) in adult services is 65.1%. Cystic Fibrosis Trust Registry Report 2010

 

Further information can be found on our website www.cftrust.org.uk.  Help and advice for those affected by Cystic Fibrosis is available through our Helpline on 0300 373 1000.

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