CF in Guernsey

The treatment of all CF patients, whether that be paediatric or adult services, are controlled by off-island CF teams, as the specialist care required is not available in the Channel Islands. Paediatric protocols allow for ‘shared care,’ reducing time spent off Island receiving routine treatment however, regular visits to a CF team are still essential.

The transition to adult care (between the ages of 16 to 18) means all but emergency care and support is handed over to a UK CF team. For most of us that means CF adult services at Southampton General Hospital.

Contact information for CF services available at the Southampton General Hospital are available in the ‘Help & Advice’ section below.

What is CF?

Cystic fibrosis is one of the UK’s most common life-threatening inherited genetic conditions affecting more than 10,800 people across the UK and Channel Islands. You are born with CF and cannot catch it later in life. One in 25 of us carry the faulty gene, usually without knowing it.

The gene affected by CF controls the movement of salt and water in and out of cells. People with CF experience a build-up of thick sticky mucus in the lungs, digestive system and other organs, causing a wide range of challenging symptoms affecting the entire body.

Genetics

To have CF, you need to have inherited two faulty copies of the gene (one from each parent), and as there are many different gene mutations that cause cystic fibrosis, each person with the condition can have very different symptoms depending on the two genes they carry. While people with CF often look healthy on the outside, each individual is battling their own range of symptoms on a daily basis.

The lungs

The build-up of mucus in the lungs causes chronic infections, meaning that people with cystic fibrosis struggle with reduced lung function and have to spend hours doing physiotherapy and taking nebulised treatments each day. Exacerbations (a sudden worsening of health, often owing to infection) can lead to frequent hospitalisation for weeks at a time, creating significant additional demands for families and home life.

The digestive system

As the pancreas becomes blocked with mucus, enzymes required for digesting food cannot reach the stomach. People with cystic fibrosis often need to take more than 50 tablets a day to help digest food and keep respiratory symptoms in check.

There is no cure at present.

Help & Advice