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Cystic Fibrosis Crying Out For A CureI’ve written before how 1 in 3 of the Cystic Fibrosis sufferers on the transplant list die waiting. Now, new figures released by the Cystic Fibrosis Trust reveal that the demand for lung transplants is not being met, with just 20% of lungs donated actually being transplanted.

Before reading more about this news I urge you to watch this video that was sent to me on Twitter (@yearwithoutbeer), oh and to sign up to the donor register.

[youtube]http://youtu.be/FZKZYXARV_4[/youtube]

Cystic Fibrosis Trust Chief Executive Ed Owen commented: “For many of those who have had a transplant, the results can be transformational. Britain has, however, a lower rate of lung transplantation than many other European countries, including Spain, France and the Netherlands.”

In response to the figures, the Trust has demanded action from all the organisations involved in transplantation. Ed said: “The UK is failing to meet the urgent and increasing need for lung transplantation for people with CF, and we are issuing an urgent call to action to all those who can bring about the policy changes to ensure people live longer.”

The consultation launched by the Trust challenges these organisations to:
• increase the number of lungs suitable for transplant by surgeons re-sizing donor lungs that are too big for smaller people with cystic fibrosis;
• give people enough information to make an informed choice when deciding which transplant centre they are referred to; and
• provide comprehensive psychological support for people with cystic fibrosis who are added to the waiting list.

The Trust has identified a number of factors that could influence the shortfall in available lungs, including the generally relatively smaller size of people with cystic fibrosis, a lack of widespread access to technology that can keep extremely ill people in need of a transplant alive, and the way in which potential donors are managed before assessment.

Another potential improvement could be achieved by a change in organ donation legislation to a soft opt-out system, which could increase the number of organs being made available.

In Northern Ireland Joanne Dobson MLA has launched a consultation on a move to a soft opt-out system, and the Trust has already expressed its support for soft opt-out legislation going through the Welsh Assembly, which it has extended to Ms Dobson’s Bill.

Professor Andrew Fisher of the Institute of Transplantation, Freeman Hospital and Newcastle University, backed the Trust’s consultation, saying: “There is an urgent need to address the current situation that sees one in three people with cystic fibrosis dying on the lung transplant waiting list.

“The process of achieving successful lung transplantation in people with cystic fibrosis is influenced by a large variety of issues and this is why I am supporting this open consultation among professionals, patients and organisations to support improved rates of transplant for people with cystic fibrosis.”

Cystic Fibrosis A Race We Must Win2013 Miles in 2013

This year I am trying to complete 2013 miles self-powered miles. It is has been 10 years since my cousin’s son Adam lost his fight with Cystic Fibrosis. Adam was just 18 years old when when he lost his lifelong battle with CF, the UK’s most common life-threatening inherited disease. Despite spending large parts of his short life in hospital Adam never once complained, not even of a headache and was determined to make the most of everyday.

My 2013 miles in 2013 challenge is in aid of the Cystic Fibrosis Trust as I have been surprised since I started fundraising for the CF Trust just how many people are unaware of this disease and so I hope my efforts will not just raise money, but also awareness of the UK’s most most common life-threatening inherited disease.

The first person to commit to sponsoring my 2013 mile challenge has committed to 1p per mile (£20.13 in total) and this got me thinking. I am hoping that as many as possible of those reading this will commit to do the same and the best thing is, if each person does this on a “pay as you go” type approach all you will need to part with is approx £2 just after each pay day. In January I completed 205.9 miles, in February I completed a further 200.9 miles, in March I completed 185.7 miles, in April I completed 192.1 miles and in May I completed 168 miles. If you can please spare £9.53 to help the Cystic Fibrosis Trust it will be greatly appreciated.

The easiest way to give your sponsorship is to visit my Just Giving page: http://www.justgiving.com/2012-AYearWithoutBeer-CF.

2013 Miles in 2013 – The rules

The rules for my 2013 miles in 2013 challenge are quite simple:

  1. All miles must be completely self powered (no motors, sails, etc)
  2. I must be able to evidence all miles, either via GPS or with a picture of any static gym equipment

To complete my 2013 miles I will be running, cycling, rowing and who knows, I might even try a few other self powered methods along the way.