SDLP Foyle MP Mark Durkan has met with representatives of the Cystic Fibrosis Trust and families affected by the life-shortening genetic condition at a House of Commons event this week (Cystic Fibrosis Week 24-30 June) to raise awareness about important issues for people with cystic fibrosis and the transplantation process.
Cystic fibrosis affects 10,000 people in the UK and 1 in 3 of those with the condition who are on the transplant list will die waiting. 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.
Mr Durkan said: “I was delighted to attend this event and learn firsthand some of the issues that affect people in Derry and throughout the North who are 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.”
Ed Owen, Chief Executive for the Cystic Fibrosis Trust said: “Too many people with cystic fibrosis are waiting for lungs that will never arrive and they will die on the waiting list. We are pleased that MPs are showing interest in this issue and we have launched a national consultation during CF Week to look at how transplantation rates can be improved for people with cystic fibrosis.”
Further information available at www.cysticfibrosis.org.uk