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Good News – a report and thank you from The Cystic Fibrosis Trust

Want to help the Cystic Fibrosis Trust in their fund raising, why not join one of their fantastic events such as half-marathons in Bath or Brighton, a full marathon in Barcelona or cycle the Coast to Coast.  Click here for further details of these and other events.

The following article was provided by the Cystic Fibrosis Trust.

What is cystic fibrosis?

Cystic fibrosis (CF) is a genetic condition affecting more than 10,400 people in the UK. You are born with CF and cannot catch it later in life, but one in 25 of us carries the faulty gene that causes it, usually without knowing.

The gene affected by CF controls the movement of salt and water in and out of cells. People with cystic fibrosis experience a build-up of thick sticky mucus in the lungs, digestive system and other organs, causing a wide range of challenging symptoms affecting the entire body.

The build-up of mucus in the lungs causes chronic infections, meaning that people with cystic fibrosis struggle with reduced lung function and have to spend hours doing physiotherapy and taking nebulised treatments each day. Exacerbations (a sudden worsening of health, often owing to infection) can lead to frequent hospitalisation for weeks at a time, interfering with work and home life.

Cystic fibrosis can cause the pancreas to become blocked with mucus, and when this happens enzymes required for digesting food cannot reach the stomach. People with CF often need to take more than 50 tablets a day to help digest food and keep respiratory symptoms in check.

One of the most striking features of cystic fibrosis is cross-infection – the risk that people with cystic fibrosis pose to each other. Two people with the condition should never meet face-to-face, as their lungs will harbour specific bugs/infections that could cause a serious infection in someone else with the condition. The risks associated with cross-infection mean that strict segregation should always be in place at CF clinics.

To have CF, you need to have inherited two faulty copies of the gene (one from each parent), and as there are many different gene mutations that cause cystic fibrosis, each person with the condition can have very different symptoms depending on the two genes they carry. While people with CF often look healthy on the outside, each individual is battling their own range of symptoms on a daily basis. 1 in 25 people in the UK carry the CF gene, and carrier testing can tell you whether you or your partner is a carrier of the defective gene that causes cystic fibrosis.

Who is the Cystic Fibrosis Trust?

The Cystic Fibrosis Trust is the only UK-wide charity dedicated to fighting for a life unlimited by CF for everyone affected by the condition. Our mission is to create a world where being born with CF no longer means a life-long struggle, when everyone living with the condition will be able to look forward to a long, healthy life.

Since we started in 1964 we have dedicated ourselves to promoting excellence in research and clinical care, as well as providing practical support and advice to people with CF and their families.

We are here to shout loud and campaign hard for better care and services for people with cystic fibrosis. We tackle issues that matter – access to medicines, fairer transplant processes and equal care for all – and the more people join in, the louder our voice will be. Together, we have the power to create a brighter future where people with cystic fibrosis can live a life unlimited.

We want to thank Banana Crumble and all of their users for supporting the Cystic Fibrosis Trust. Without a community such as yourselves, we wouldn’t be able to continue the vital work that we do for all those living with CF.