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Find out about cystic fibrosis
On this page you can find out more about cystic fibrosis and what the condition means for the tens of thousands of people living with the condition world-wide. We also take a look at some of the issues raised in the film 'Five Feet Apart'. You can also take a look at our discussion guide to help support you through any conversations you have around the film. It also includes resources if you are struggling with any of the topics raised in the film.
What is cystic fibrosis?
Cystic fibrosis is one of the UK’s most common life-threatening genetic conditions. It’s caused by inheriting two copies of a defective gene that one in 25 people in the UK carry, usually without knowing it. If two carriers have a baby, the child has a one-in-four chance of having cystic fibrosis.
Cystic fibrosis affects the movement of salt between cells, causing the liquid in the lungs and digestive system to be thicker than usual. This can make it difficult to breathe and cause repeated lung infections, as well as issues with digesting food and absorbing nutrients. Half of those who died from CF last year were aged under 32, though babies born with the condition today could be expected to live much longer.
Why can’t people with cystic fibrosis meet each other?
In the past, people with CF were allowed to spend time with each other and some will even remember going to ‘CF camps’, where they were able to meet and spend time with others with the condition.
However, in the early 1990s it was discovered that the bug B. cepacia could pass between people with cystic fibrosis. This is called cross-infection.
People with CF can carry a number of different bugs, including B. cepacia, which Will has in ‘Five Feet Apart’. Other bugs that are dangerous to people with CF include Pseudomonas aeruginosa, Staphylococcus aureus, H. influenza, Aspergillus, MRSA and Nontuberculous Mycobacterium abscessus, which can make people with CF ineligible for lung transplant.
Why is cross-infection dangerous for people with cystic fibrosis?
A number of bugs can be harmless to people who don’t have CF, but because of the thick, sticky mucus that sits in the bodies of people with CF, these usually harmless bugs can settle in the lungs (known as colonising) and cause devastating damage.
When the spread of B. cepacia was discovered, it was recommended that people with the bug be segregated. This eventually came to be the policy for all people with cystic fibrosis. While in the US, a rule exists called the ‘six foot rule’ which says that people with CF must be kept a minimum of six feet apart. today in the UK it is recommended that people with CF do not meet or spend time with each other.
Where this isn’t possible – for example, in families where two children have the condition – stringent cross-infection procedures are taken to ensure that people with CF are kept safe and do not contract dangerous bugs.
Why do people with CF need lung transplants?
Most people with CF will need a lung transplant because of the damage that is done to their lungs by repeated bacterial infections. This is not a procedure that is taken lightly, and deciding when to list someone with CF for transplant is a very complicated decision involving a number of factors, like how unwell the person is and what bugs they are infected with.
You might have seen in Five Feet Apart that some characters aren’t able to have transplants because they are carrying certain bugs, like B. cepacia. This is because some bugs are incredibly difficult to treat and are resistant to antibiotics. The Cystic Fibrosis Trust is funding ground-breaking research to create novel therapies to treat these dangerous bugs.
It is still important that people with CF do not meet, even after they have had a lung transplant, as they can still carry and spread dangerous germs to other people with cystic fibrosis.
Do you still have CF once you have had a lung transplant?
A lung transplant, or other organ transplant – for example transplant of the pancreas or liver, which can also be damaged by cystic fibrosis – will replace a damaged organ with a healthy one. However, as cystic fibrosis is a genetic condition, the rest of the person’s body will continue to have cystic fibrosis, and some CF treatments may still be needed after a transplant.
What is a clinical trial?
Clinical trials are projects designed to investigate the effects of different treatments on human health. These treatments might be new drugs, medical devices or behavioural and lifestyle changes. People with CF may take part in clinical trials to test new and emerging CF treatments, and some of the treatments that were tested through clinical trials in the past are now used commonly to treat aspects of the condition – find out how Martin was involved in the DNase trial, a drug that helps to thin mucus in the lungs and is still used today.
In ‘Five Feet Apart’, Will travels around the world to take part in clinical trials. We believe that in the UK people with CF should be able to access clinical trials without having to travel out of their home country. The Cystic Fibrosis Trust started the UK’s first CF clinical trials database, the Trials Tracker, which allows people with CF to find trials they are eligible for near them.
How can I help people with cystic fibrosis?
The drug Will is trialling in the film is fictional, but there are real life-saving drugs being developed right now.
Make a donation today by texting APART to 70300 to give just £3, or make a donation online. With your support we fund ground-breaking research to ensure that the latest emerging treatments are developed sooner and keep up the fight for access to these drugs by shouting loud about the issues that matter.