David Ramsden
Chief Executive, Cystic Fibrosis Trust
Cystic fibrosis (CF) is an incurable life-limiting genetic condition affecting more than 10,800 people in the UK. To mark the end of Cystic Fibrosis Awareness Week, it is important to reflect on life with the condition.
Cystic fibrosis is often thought of as a ‘lung disease’ as people with the condition experience a range of respiratory symptoms, however in reality CF affects many parts of the body. One in 25 people carry the faulty gene that causes CF and half of people who die from CF are aged 36 or under.
The condition causes a build-up of thick sticky mucus in the lungs, digestive system and other organs. This mucus provides the perfect breeding ground for harmful bacteria, making people with CF at high risk of lung infections.
Managing the condition
People with CF undergo a rigorous daily regime of treatments to stay healthy, including taking inhaled and injected drugs to clear mucus and fight infections, taking dozens of pills to digest food and having gruelling physiotherapy morning and night. People with CF can never meet each other in person due to the risk of passing on harmful bacteria which could make them very ill. For this reason, the condition can be incredibly isolating.
One in 25 people carry the faulty gene that causes CF and half of people who die from CF are aged 36 or under.
In the last few years, several new drugs have become available for people with CF – most recently, a triple combination therapy, which targets the underlying cause of CF. Since being approved for use in the UK in 2020, this drug has helped many people with CF breathe more easily, slowing down damage to the lungs and bringing the hope of a longer, healthier life.
Looking to the future
It is important to remember that drugs like this are not a cure and don’t work for everyone. New treatments are urgently needed to ensure that every person with CF can look forward to a brighter future.
As we mark the end of CF awareness week, the Cystic Fibrosis Trust renews its commitment to funding ground-breaking research, offering support and advocating for those living with the condition. All those with CF deserve to live a life unlimited, we won’t stop until everyone is physically well, mentally well and living a long and fulfilling life.
