Mission Statement

Our mission is to provide outstanding care for children and young people with Cystic fibrosis. Achieved by highly skilled multidisciplinary professionals, working together to deliver both individualised and family centred care.

About Cystic Fibrosis

Cystic fibrosis (CF) is a life limiting inherited disease, affecting over 10,000 people in the UK.

You can't catch or develop cystic fibrosis, it's something you're born with and most cases in the UK are now diagnosed soon after birth.

If you or someone you know has been recently diagnosed with cystic fibrosis it can be overwhelming. CF is a complex disease and the types and severity of symptons can differ widely from person to person. Breakthrough treatments have added years to the lives of people with CF. There is no cure for CF however there have been tremendous advancements in research and care with many people with CF being able to realise their dreams of attending college, pursuing careers, having meaningful relationships and children of their own.

CF Condition Genetic Inheritance

Cystic fibrosis is an inherited genetic disease caused by a faulty gene. These genes control the movement of salt and water in and out of your cells, resulting in the lungs and digestive system becoming clogged with mucus, making it hard to breathe and digest food.

Each of the thousands of genes in the body has 2 copies. For CF to occur, both copies of the CF gene (CFTR) need to be faulty. Each parent of a child with CF will have one faulty copy of the gene and one normal copy; having one normal copy is enough to stay healthy. Each parent passes on one copy of each of their CF genes

This means that there is a 1 in 4 chance of both faulty genes being passed on to their children.

Symptoms of cystic fibrosis can include a troublesome cough, chest infections, prolonged diarrhoea and poor weight gain. These symptoms are not unique to cystic fibrosis. Cystic fibrosis is a complex disease that affects many different organs.

There is currently no cure for cystic fibrosis but many treatments are available to manage it, including physiotherapy, exercise, medication and nutrition.

More than half of the cystic fibrosis population in the UK will live past 41, and improved care and treatments mean that a baby born today is expected to live even longer.

 

People with CF are at greater risk of getting lung infections because of the thicker and stickier mucus which builds up in their lungs allowing germs to thrive and multiply. Chest infections and a troublesome cough, caused mostly by bacteria are a serious and chronic problem for many people living with CF.

A combination of physiotherapy and medication can help control chest infections and prevent the buildup of mucus that damages the lungs.

To stay healthier and reduce the risk of cross infection people with CF should not meet or come into close contact with one another.

It is common for people with cystic fibrosis to experience some problems with lung function, although not everyone is affected.

CF Condition - How it affects the lungs

People with CF have to pay more attention to what they eat and how they digest food. In most people with CF the digestive tract works a little differently. Cystic fibrosis affects the pancreas (see picture) because of the buildup of thick, sticky mucus that blocks the ducts, stopping digestive enzymes produced in the pancreas,  from reaching the intestines to aid digestion. This can make it difficult for people with CF to grow normally and maintain a healthy weight

Supplements can help compensate for the lack of enzyme production by the pancreas, such as digestive enzymes that most people with cystic fibrosis take with each meal to help digest food

CF Condition - How it affects the pancreas

The South and Central West Midlands Cystic Fibrosis Network provide care for around 300 patients.

The Network comprises of 7 centres:

Designated Specialist Centre

Shared Care Centre’s

Help children understand CF

Life Stages

CF affects patients and families at different life stages. We have put together information & advice to help at every stage

Latest News

Family story

Ruby's Story

One thing that is so difficult to imagine after diagnosis is exactly what life will be like for your child.

"Cystic fibrosis has never stopped ruby doing anything! Yes her days may require a little more structure and planning to enable her to do everything else her friends do but it certainly does not stop her."