Cystic fibrosis FAQs

The basics

  • What is cystic fibrosis?

    Cystic fibrosis (CF) is one of the UK's most common life-threatening inherited diseases. Cystic fibrosis is caused by a defective 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. Find out more about what CF is and how it affects the body.

  • How common is cystic fibrosis?

    Over 11,000 people in the UK have cystic fibrosis; that's 1 in every 2,500 babies born. Cystic fibrosis affects around 100,000 people in the world.

  • What causes cystic fibrosis?

    Cystic fibrosis is a genetic condition. One person in 25 carries the faulty CF gene, usually without knowing; that's 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.

  • Can you catch cystic fibrosis?

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

    Find out more about carrier testing in our factsheet

  • Is cystic fibrosis known by any other name?

    Cystic fibrosis is commonly known as CF.

    Cystic fibrosis may also be known as mucovoidosis or mucoviscidosis.

  • How are people diagnosed with cystic fibrosis?

    All newborn babies in the UK are now screened for cystic fibrosis shortly after birth using the heel-prick blood test. This tests for the most common mutations of the gene that causes cystic fibrosis.

    Around one in 10 children with cystic fibrosis are diagnosed before, at, or shortly after birth, due to a condition called meconium ileus that causes the gut to become blocked with meconium - a thick, dark, sticky substance thatis made in all babies' intestines before being born. Urgent surgery may be needed to relieve the blockage.

    Some children born earlier than 2007 who were not screened at birth, or those with more unusual mutations of the cystic fibrosis gene, may be diagnosed later in life, after they have become unwell and developed symptoms.

    Find out more about diagnosis

  • What are the symptoms of cystic fibrosis?

    In people with cystic fibrosis the lungs make thicker sputum (mucus) than normal, which can trap bacteria in the small airways and lead to infection. Symptoms that typically develop include persistent cough, wheezing, shortness of breath and breathing difficulties and repeated chest infections. Find out more about how the lungs are affected.

    Thickened mucus secretions block the normal flow of digestive juices from the pancreas, which means food can not be digested or absorbed properly, in particular fatty foods and fat-soluble vitamins (vitamins A, D, E and K). This can cause malnutrition, leading to poor growth and poor weight gain, a bloated abdomen and tummy aches, constipation and prolonged diarrhoea. Find out more about how the digestive system is affected.

    Other symptoms can include sinus infections and nasal polyps. Some adults with cystic fibrosis may also get cystic fibrosis-related diabetes (CFRD), arthritis, osteoporosis and liver problems. Explore some of these other complications in more detail.

    Symptoms usually first develop within the first year of life, but in a minority of cases may not appear until later in childhood or beyond. The severity of symptoms can vary and not all people with cystic fibrosis will have every symptom.

    Take a look at our interactive body for more information on the symptoms of cystic fibrosis.

  • Are there different types of cystic fibrosis?

    There are over 2,000 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.

  • Are men as likely to have cystic fibrosis as women?

    Yes, cystic fibrosis is as common in both sexes.

  • Does cystic fibrosis affect black, Asian and minority ethnic groups?

    According to the 2019 UK CF Registry report, over 93% of the CF population in the UK are white, just under 3% are Asian, 0.2% are Black and just over 1% are of mixed heritage.

    Similar data are reported in the 2018 Cystic Fibrosis Foundation (CFF) Patient Registry report – 4.7% of the CF population in the US are African American, 3.7% are other non-white ethnicities and 9.4% are Hispanic.

    In a global context, studies in the past two decades have shown that CF is present and more frequent than was previously thought in populations of non-European descent, in regions including Asia, Africa, the Middle East and Latin America.

  • What is the life expectancy of someone with cystic fibrosis?

    According to the most recent report from the UK Cystic Fibrosis Registry, based on people with CF who are recorded as alive 2018-2022, half of people born with cystic fibrosis in 2022 would live to at least 56. For more information please visit our UK CF Registry Annual Data Reports page.

    We also report the median age of death in each year. In 2022, the 64 people with CF who died had a median age of 33.

Day to day life

  • How does cystic fibrosis affect daily life?

    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 CF will have a feeding tube overnight. You can read more about each of these treatments in our factsheets.

    For those who are very ill with cystic fibrosis and have 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 oxygen to help them breathe.

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

    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.

  • Do people with cystic fibrosis require a special diet?

    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 CF 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 that are 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.

    Find out more about nutrition and cystic fibrosis

  • Does cystic fibrosis affect fertility?

    Fertility, or the ability to have children, is usually normal or only slightly reduced in women, but most men with cystic fibrosis are infertile. This is due to an abnormality/absence of the vas deferens (the tube which carries sperm from the testis to the penis). The tubes are effectively blocked or absent altogether. Although sperm is produced and sexual function remains entirely normal, men with CF can seldom father children naturally.

    However, recent advances in in-vitro fertilization and aspiration of sperm (extracting sperm directly from the testes) has allowed some men with cystic fibrosis to father children with clinical assistance. Some women with CF may be advised not to have children if their health is poor, as carrying a baby and giving birth could be detrimental to their health. Take a look at our resources around starting a family to find out more.

  • Can people with cystic fibrosis socialise with each other?

    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 other people with the condition. We offer a forum for people with cystic fibrosis so they can interact safely.

    Find out more about cross-infection

  • Do people with cystic fibrosis have to pay prescription charges?

    In England cystic fibrosis is currently not one of the medical conditions that makes people exempt from paying prescription charges. Currently people in Wales, Scotland and Northern Ireland do not pay prescription charges.

    Find out more about prescription charges

  • Are people with cystic fibrosis entitled to benefits?

    Those with cystic fibrosis can be entitled to benefits. 

    Find out more about how we can help

  • Does cystic fibrosis restrict employment opportunities?

    As people with cystic fibrosis are living longer, healthier and more independent lives, many more are taking the opportunity to work part-or full-time. In the last report from the UK CF Registry, around 70% of those adults with cystic fibrosis who completed an employment questionnaire were in work or education. 

    There can be issues for people with cystic fibrosis in employment regarding time off or type of working environment.

    Find out more about employment

Treatment and transplants

  • How is cystic fibrosis treated?

    People with cystic fibrosis often have to undergo a rigorous daily regime of treatments to stay healthy. This can include taking inhaled and injected drugs to clear mucus and fight infections, taking dozens of enzyme pills to digest food and having physiotherapy morning and night. 

    Find out more about treatments

    People with cystic fibrosis may also need a transplant. Lung transplants are the most common type for people with cystic fibrosis, as usually these are the organs most affected by cystic fibrosis. However, some people will have problems with their liver, kidneys or pancreas, and may need these organs transplanted.

    Find out more about transplants

  • Does treatment start as soon as a baby is diagnosed with cystic fibrosis?

    Most babies with cystic fibrosis will need to start taking digestive enzymes straight away and will also begin physiotherapy to keep the lungs clear of mucus.

  • Where do people with cystic fibrosis get their care?

    The majority of adults with cystic fibrosis go to one of the specialist CF centres in the UK. Children may have a shared-care arrangement, where they have some of their care at a local hospital and some at the nearest specialist CF centre, though the centre takes responsibility for their health.

    It is vitally important that those with cystic fibrosis receive appropriate healthcare to ensure a better quality and length of life. Therefore, we strongly recommend that people with CF receive care from the multidisciplinary team of specialist doctors, nurses and allied health professionals at a recognised specialist CF centre. This includes specialist CF dietetic care and physiotherapy and should also provide psychosocial support.

    Find out more about CF centres

  • Will everyone with cystic fibrosis need a transplant?

    Transplantation is only appropriate for a patient who is severely ill and for whom all other forms of conventional treatment are no longer helpful. Not all patients at this stage of the disease are suitable for a transplant and some patients may choose not to go on the transplant list.

  • What is the survival rate for someone who has a transplant?

    It is important not to place too much emphasis on statistics when it comes to transplants, as some people sadly do not recover from a transplant and others are still thriving 10 years on, but the statistics show that around 70% of those with cystic fibrosis survive for five years post transplant.

  • Does Cystic Fibrosis Trust support 'soft opt-out' organ donation?

    We support any move that means more people with cystic fibrosis will have a chance of receiving a successful transplant.

  • Can someone with cystic fibrosis be an organ donor?

    Yes they can, as not all the organs are affected by cystic fibrosis.

Screening for cystic fibrosis

  • Is there any antenatal screening for cystic fibrosis?

    Yes, in some cases. Pregnant women can have amniocentesis or CVS to test the embryo for cystic fibrosis. Occasionally, if the baby has meconium ileus (a bowel blockage commonly associated with cystic fibrosis) this can be picked up on an ultrasound scan and CF may be suspected.

  • How will I know if I am a carrier of the gene that causes cystic fibrosis?

    Most people do not know if they are a carrier. If you have cystic fibrosis in your extended family, you should ask your GP to be tested as you are more likely to be a carrier than the general population.

    Find out more about carrier testing

  • Are babies screened for cystic fibrosis at birth?

    Yes, since October 2007 all babies are offered screening for cystic fibrosis shortly after birth as part of the heel-prick blood test.

  • What are PGD and PGH?

    Pre-implantation Genetic Diagnosis (PGD) and Pre-implatantation Genetic Haplotyping (PGH) are ways in which two known carriers of the cystic fibrosis gene can have a baby without cystic fibrosis. Both techniques involve screening embryos conceived by IVF. However, whereas PGD tests for a specific mutation in a gene, PGH is able to identify a cystic fibrosis affected gene without needing to know the specific mutation.

  • Why isn't Cystic Fibrosis Trust campaigning for everyone to be screened to see if they are a carrier?

    We recognise that screening everyone to see if they are a carrier of the cystic fibrosis gene would be very expensive and impractical. However, we do recommend that anyone who is a blood relation of someone with cystic fibrosis is tested for carrier status.

Gene therapy and other research

  • What is gene therapy?

    Genetic therapies are a type of treatment that are being developed for cystic fibrosis. They work in a completely different way to current medicines for CF.

    Gene therapy is a type of genetic therapy where a new piece of DNA containing a specific gene is delivered to cells (eg a correct copy of the CFTR gene). Cells can use the correct, newly-delivered copy of the CF gene to create a fully working protein. (The original, faulty copy of the CF gene is still present in cells).

  • Is gene therapy a cure for cystic fibrosis?

    Gene therapy is not a cure for cystic fibrosis, but effective gene therapy could halt or prevent the lung damage that causes 90% of deaths of people with cystic fibrosis.

  • Will gene therapy only benefit newborn babies or will older children and adults benefit too?

    Gene therapy would benefit most people with cystic fibrosis and works regardless of age as it replaces the faulty gene mutation with a correct version. Although it cannot reverse lung damage, it would stop the lungs from deteriorating further.

Questions about Cystic Fibrosis Trust's research

  • What research does Cystic Fibrosis Trust fund?

    We are the UK's only national charity dealing with all aspects of cystic fibrosis. We fund research to improve cystic fibrosis care and treatment, and aim to ensure appropriate clinical care and support for people with cystic fibrosis.

  • What progress is being made in cystic fibrosis research?

    Ever since we began in 1964 we have funded research into every aspect of cystic fibrosis. Together with our national and international partners we continue to increase our understanding of cystic fibrosis and improve understanding, treatments and management of the condition.

    We are also involved with social research, exploring the non-medical impact of cystic fibrosis, and its implications for quality and length of life.

    Read more about our research

  • Does Cystic Fibrosis Trust fund research involving animals?

    There is an urgent need for research to ensure that everyone with cystic fibrosis can live without limits.

    We understand that some people are very concerned about the use of animals in research. However, we also recognise that research involving animals has made, and continues to make, a vital contribution to the understanding and treatment of a wide range of medical conditions including CF.

    Most of the research that we fund is carried out on cells in a laboratory, with computers or on patients. We only fund and support research involving animals when no alternatives are available, and where institutions can clearly demonstrate that they comply with the rigorous laws that safeguard the welfare of animals used in research in the UK.

    We are a member of the Association of Medical Research Charities and endorse the AMRC's position on the use of animals in medical research. We are also a signatory to the Concordat on Openness in Animal Research which sets out how organisations report the use of animals in scientific, medical and veterinary research in the UK. 

  • How can someone with cystic fibrosis get on clinical trials for genetic therapies and other new treatments?

    Talk to your CF team to find out about clinical trials that you may be able to take part in. You can find all trials currently open to recruitment on our Trials Tracker or by contacting us at [email protected]

  • Does Cystic Fibrosis Trust work with other cystic fibrosis organisations around the world?

    Yes, the cystic fibrosis community is a close-knit one and we have links with all the major cystic fibrosis charities and organisations worldwide.

  • Does the Trust receive funding from pharmaceutical companies?

    From time to time we receive payments from pharmaceutical companies who have an interest in cystic fibrosis research for specific things like contributing to the costs of conferences and publications, or funding long-term safety studies of new drugs. It will always be clearly indicated if we have received funding from a pharmaceutical company to help with one of our projects.

    Find out more about our work with the pharmaceutical industry

Research we fund

We fund research to tackle some of the most pressing issues in CF today. Find out how your donations are making a difference.

What is CF?

Cystic fibrosis, or CF, affects the lungs, digestive system and other organs, and there are over 10,600 people living with it in the UK.

Contact us

Get in touch with us to speak to someone on our Helpline, find out about an event or speak to our Press Team.

Your donation will make a difference:

Select amount
Select amount