Jenny to champion the work of the Cystic Fibrosis Trust

September 11, 2014 11:07 AM

Jenny Willott MP

Cardiff Central MP Jenny Willott has become one of 40 MPs from across the UK to champion the work of the Cystic Fibrosis Trust and help beat cystic fibrosis for good.

Cystic fibrosis is a life-shortening inherited disease, affecting over 10,000 people in the UK. The disease causes the lungs and digestive system to become clogged with mucus, making it hard to breathe and digest food. There is no cure for cystic fibrosis but treatments are available to manage it.

The Cystic Fibrosis Trust funds research to understand better and treat cystic fibrosis, review standards of care, and provide information and advice to the cystic fibrosis community.

Most people with Cystic Fibrosis will need a lung transplant to avoid an early death. Cystic fibrosis is the third most common reason for lung transplantation and has the best survival rate. Once on the waiting list, patients are expected to live no more than two years.

In Wales there are currently 9 people with cystic fibrosis on the active lung transplant waiting list, one of those is also waiting for a liver transplant. Between 2008 and 2013 twelve lung transplants and two kidney transplants took place on Welsh cystic fibrosis patients.

Commenting, Jenny Willott MP, said:

"I am very proud to champion the work of the Cystic Fibrosis Trust, particularly as the Trust is in its 50th year. During National Transplant Week I highlighted the need for more people to register on the Organ Donation Register to help save or transform the lives of desperately ill people. As a champion I want to continue to raise issues that affect the Trust.

"In Parliament debates have taken place on increasing sign-ups to the organ register, the treatment of cystic fibrosis and the Trust's campaign for a national lung allocation system. A new All Parliamentary Party Group has also been set up.

"I hope this will lead to greater awareness about cystic fibrosis and the issues around service provision to help improve cystic fibrosis care.

I hope to visit the Cystic Fibrosis Centre in Cardiff later this year to gain a better understanding of the amazing work being done there to help sufferers manage their condition."

What would you like to do next?