Frequently Asked Questions

About Cystic Fibrosis

Q.

What is Cystic Fibrosis?

A.

Cystic fibrosis is one of the UK's most common life-threatening inherited diseases. Cystic fibrosis is caused by a single faulty gene. As a result, the internal organs, especially the lungs and digestive system, become clogged with thick sticky mucus resulting in chronic infections and inflammation in the lungs and difficulty digesting food.

Q.

How common is Cystic Fibrosis?

A.

Around 10,500 people in the UK have cystic fibrosis, that's 1 in every 2,500 babies born. Cystic fibrosis affects around 100,000 people around the world.

Q.

Can you catch Cystic Fibrosis?

A.

No, cystic fibrosis can't be caught; it can only be caused by inheriting two copies of the faulty gene. You could be a gene carrier without having cystic fibrosis.

Q.

What causes Cystic Fibrosis?

A.

Cystic Fibrosis is a genetic condition. One person in 25 carries the faulty cystic fibrosis gene usually without knowing, over two million people in the UK. If two carriers have a baby, the child has a one in four chance of having Cystic Fibrosis.

Q.

Is there a cure for cystic fibrosis?

A.

Sadly, there is no cure for cystic fibrosis. The aim of treatment is to ease symptoms and make the condition easier to live with. For some rare types of cystic fibrosis, such as the G551D mutation, there are treatments which aim to compensate for a faulty gene. Treatment can also prevent or reduce long-term damage caused by infections and other complications.

The Network

Q.

What is the network for CF?

A.

The West Midlands South & Central Paediatric Cystic Fibrosis (CF) Network is a large specialist clinical network comprising approx 300 children and teenagers with cystic fibrosis. Of these patients, a number are cared for on a full-care basis by the Regional Centre (Birmingham Children’s Hospital – BCH), and the other two-thirds on a shared care basis with six network clinics. Service user feedback is generally excellent, particularly with regard to the dedicated, hard-working, experienced and caring staff across the entire network. Clinical outcomes, including UK CF Registry data, are generally excellent.

Advice, support and help

Q.

Are there different types of Cystic Fibrosis?

A.

There are over 1,500 identified mutations of the cystic fibrosis gene. Cystic fibrosis is a very complex condition that affects people in different ways. Some suffer more with their digestive system than the lungs. Others have no problem with their pancreas.

Q.

How does Cystic Fibrosis affect daily life?

A.

Cystic fibrosis affects everyone differently, but for many it involves a rigorous daily treatment regime including physiotherapy, oral, nebulised and occasionally intravenous antibiotics, and taking enzyme tablets with food. Some people with cystic fibrosis will have a feeding tube overnight. For those who are very ill with cystic fibrosis and with very poor lung function, daily life can be a struggle as basic tasks can leave them breathless. Some patients use a wheelchair to get around, and use oxygen to help them breathe.

Q.

Is there anything that children with cystic fibrosis can't do?

A.

Children with cystic fibrosis should be encouraged to do things that their peers do, although there are a few things that should be avoided because they may harbour particular bugs which can cause problems for people with cystic fibrosis.

Q.

Do people with cystic fibrosis require a special diet?

A.

In most people with cystic fibrosis the small channels that carry the digestive juices from the pancreas to the intestine become clogged with thick, sticky mucus. As a result people with cystic fibrosis do not absorb and digest their food easily. This is called ‘pancreatic insufficiency’. As well as taking enzyme pills to help digest food most people with cystic fibrosis require 20% to 50% more calories each day than people without cystic fibrosis. Some may need considerably more. People with cystic fibrosis are encouraged to eat cakes, crisps, chocolate and other foods often considered 'unhealthy'. It is important to maintain a healthy weight as it helps the body deal more effectively with chest infections or weight loss caused by illness.

Q.

What is the treatment for Cystic Fibrosis?

A.

If your baby has cystic fibrosis, he or she should be looked after by a team with expert knowledge of the condition. The team could include senior doctor (consultant) who is an expert in cystic fibrosis, specialist nurse, physiotherapist and a dietitian. Your GP may play a part in his care, too. There is no cure for cystic fibrosis, but regular treatments can help to manage the condition. Frequent physiotherapy, and mist inhaled through a mask, help to clear the mucus from your child's lungs. Your child's physiotherapist can teach you how to do this at home. As your child grows up, he can probably learn to do the physiotherapy himself most of the time. Other treatments may include exercises to help his lungs and build stamina, a special diet and tablets to help him digest food, tablets to help his body break down mucus and regular antibiotics to ward off chest infections.

Q.

Can people with cystic fibrosis socialise with each other?

A.

People with cystic fibrosis should not meet each other as they have different bacteria or 'bugs' that grow in their lungs. These 'bugs' are rarely harmful to those who do not have cystic fibrosis but may be harmful to others who have cystic fibrosis but who do not have the same 'bugs'. We offer internet message boards for people with cystic fibrosis so they can interact safely.

Get involved

Q.

I want to help, what can I do?

A.

There are many ways to be involved in CF from support groups, patient involvement and fundraising. Due to the nature of the condition affecting babies and young children, family support is at the heart of the management of the condition. For more information on getting involved, read more in our family section such as stories and fundraising.