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Burnham For Mayor

Monday, 15 July 2013

Cystic Fibrosis Week

I met with representatives of the Cystic Fibrosis Trust and families affected by cystic fibrosis at an event at the House of Commons.The event aimed to raise awareness amongst MPs and other key decision-makers about important issues for people with cystic fibrosis and the transplantation process.

1 in 3 of those with cystic fibrosis who are on the transplant list will die waiting. Cystic fibrosis is a life-shortening genetic condition affecting 10,000 people in the UK. New treatments and better clinical care are helping people with cystic fibrosis to live longer but many will still reach a point where their only hope is a double lung transplant.

I was delighted to attend this event and learn first hand some of the issues that affect my constituents living with cystic fibrosis. I was also able to learn about the work of the Cystic Fibrosis Trust and find out more about their open consultation looking at the issues affecting the number of lung transplants for people with cystic fibrosis.”

Most people don’t understand what cystic fibrosis is, or what it does, until someone close to them is affected by it. They soon discover it’s a life-shortening genetic condition - only half live to celebrate their fortieth birthday.

Cystic fibrosis directly affects around 10,000 people in the UK.

The faulty gene is carried by over two million people in the UK, most of whom have no idea. If two carriers have children, there’s a one in four chance their child will have the condition, which slowly destroys the lungs and digestive system.

People with cystic fibrosis often look perfectly healthy. But it’s a lifelong challenge involving a vast daily intake of drugs, time-consuming physiotherapy and isolation from others with the condition. It places a huge burden on those around them and the condition can critically escalate at any moment.

The Cystic Fibrosis Trust is here to beat it and make a daily difference to the lives of those with cystic fibrosis, and the people who care for them. Fighting it is a battle we must win. That’s why we must keep working for and fundraising for change. That's why we must develop better treatments and, ultimately, a cure. Cystic fibrosis is beatable. Find out more here or call the helpline 0300 373 1000.