SDLP Foyle MP Mark Durkan has joined The Railway Children actress Jenny Agutter at Westminster this week to launch the All-Party Parliamentary Group on Cystic Fibrosis and raise awareness of the life-shortening genetic condition which affects over 10,000 people in the UK, approximately 500 of whom live in Northern Ireland.
Jenny Agutter, whose family have been left devastated by the disease, carries the faulty gene which is responsible for slowly destroying the lungs and digestive system.
Mr Durkan said: “I was delighted to attend this event and meet families of people living with cystic fibrosis, as well as Trustees of the Cystic Fibrosis Trust, donors and health sector professionals.
“Most people don’t understand what cystic fibrosis is, or what it does, until someone close to them is affected by it. Indeed, only half of people who have the condition live to celebrate their fortieth birthday.
“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 is predicted that within five years, 90% of people with cystic fibrosis could benefit from drugs which tackle the underlying genetic defect. It is therefore vital that patients have access to these medicines as soon as possible.
“I look forward to working with the cystic fibrosis community, clinicians and other politicians who all share the hope for a future where this devastating, life-limiting disease is beaten.”