Friday 21 June 2013

Ed Owen, looking forward to CF Week

I am looking forward to this years CF Week. Here at the Trust we are having an event every day.  It promises to be as lively as ever with over 100 events across the UK during the week. As we embark on our fundraising events there is also a serious side to the week, the campaign on transplants. This area forms a major part of the Cystic Fibrosis Trust's work this year. With improved treatments, better understanding of cystic fibrosis and continued research, people with cystic fibrosis are living longer than ever before, and often with a better quality of life. There has never been a more positive time. However, sadly, people with cystic fibrosis will still succumb to the effects of the condition, which does the most damage to the lungs. It is still the case that the biggest cause of death in people with cystic fibrosis is due to lung failure.

For some the only course of treatment is to receive a transplant, but once accepted on to the transplant list the wait can be as long as 412 days, or 3 years.

For 1 in 3 that call never comes.

Too many people are waiting too long for transplant, there are still issues with a lack of available lungs and a lack of facilities to successfully retrieve lungs.

This is a hard reality to face, but the devastation for families who lose a loved one to cystic fibrosis is mine and our driver for change. People who need a lung transplant with cystic fibrosis are usually under 40 years old. For younger people the possibility of many more years of life after a successful transplant gives hope to them and their families. People waiting for a transplant should be able to receive one. That is why we are starting CF Week this year with a strong message. We want the policy makers, transplant and clinical community to join us in a consultation to find a solution to the problem of people with cystic fibrosis not getting the lungs they need.

The Trust will be highlighting to the media the cases of people with CF who have agreed to share their experiences of being on the waiting list.

Log on to and find out more about the issues around transplant, join in with our consultation, we want to hear your views.

Have a good CF Week.


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