The Welsh Liberal Democrats Assembly for South Wales West, Peter Black has met with representatives of the Cystic Fibrosis Trust and families affected by cystic fibrosis, this month to mark Cystic Fibrosis Week at an event at the Welsh Assembly
Mr. Black said:
"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. I will be supporting the consultation, to be launched during CF Week."
Kayleigh Old, Public Affairs Officer for the Cystic Fibrosis Trust said:
"This event allowed us to raise awareness among Welsh policy makers about the work of the Cystic Fibrosis Trust and highlight any issues affecting cystic fibrosis services in Wales. We were also able to alert the Health Minister to the consultation we will launch on 24 June in to improving rates of transplant for people with cystic fibrosis."
This year Cystic Fibrosis Week is focussed on transplants for people with cystic fibrosis. Every year a third of people with cystic fibrosis die waiting for a transplant and the wait can be agonisingly long. New treatments and better clinical care are helping people with cystic fibrosis to live longer but the vast majority will suffer irreparable lung damage. Many people will reach a point where the only treatment option left is a lung transplant. The Cystic Fibrosis Trust is using CF Week to highlight the issues that impact on why a person does not receive their transplant in time. An open consultation will be launched to explore how transplantation rates can be improved for people with cystic fibrosis.
Money raised from the events will enable the Cystic Fibrosis Trust to invest in cutting-edge research to develop better treatments and, ultimately find a cure. It will also provide support to those with cystic fibrosis and their families and help the Trust to drive up standards in clinical care.
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Notes to Editors:
Cystic Fibrosis Week runs from Monday 24 June until Sunday 30 June.
- 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 that 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 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. Find out more at: cysticfibrosis.org.uk or call our helpline 0300 373 1000.