Ahead of CF week which takes place next week, we’re taking a closer look at CF. We’re talking about exactly what it is, what the symptoms are and how respiratory physiotherapy could help treat your symptoms.
What is it?
The dictionary definition of CF is:
a hereditary disorder affecting the exocrine glands. It causes the production of abnormally thick mucus, leading to the blockage of the pancreatic ducts, intestines, and bronchi and often resulting in respiratory infection
The condition affects more than 10,400 people in the UK split equally between men & women, and it’s one of the UK’s most common life-threatening inherited diseases. One in 25,000 babies are born with CF. As it’s hereditary it means that it’s something you are born with, it isn’t something that you can catch from someone else later in life. In terms of how it is passed on genetically, one in 25 of us carries the faulty gene that causes CF, usually without being aware that we are a carrier. If there is a history of CF in your family, your partner’s family, or if you already have a child with CF, you may decide to be tested to see if you are a carrier of the faulty gene. This test comes in the form of a mouthwash or blood test.
You will be diagnosed as a newborn if you have CF. It forms part of the heel-prick test that all newborns in the UK receive, and positive results are followed up using a sweat test.
What are the symptoms?
The gene affected by CF controls the movement of salt and water in and out of cells. People with cystic fibrosis suffer from a build-up of thick, sticky mucus in the lungs, digestive system and other organs.
shortness of breath and breathing difficulties
repeated chest infections
When you live with CF your daily life is constantly challenged by these symptoms because they can affect your whole body. Those with the condition struggle with reduced lung function and are more prone to lung infections. Nebulised treatments and chest physiotherapy are in most cases daily factors of living with CF, and cycles of infections can lead to regular bouts in hospital to recover.
Treatment will be bespoke for each patient as the severity of symptoms can vary. Most people will need a rigorous daily treatment regime to include:
oral, nebulised and even intravenous antibiotics when needed for prevention & treatment of infections
taking enzyme tablets with food
The enzymes are required because it is common for those with CF to suffer from ‘pancreatic insufficiency’. This is because the thick, sticky mucus that occurs with CF causes the small channels carrying the digestive juices from the pancreas to the intestine to become clogged. This affects the body’s ability to absorb and digest food easily. The enzyme is therefore to aid with digestion.
Regular physiotherapy to keep your lungs clear of mucus is key, and will form part of your treatment programme.
There’s a whole host of information available on the Cystic Fibrosis Trust website so please do head there as it’s an invaluable resource.
Try more exercise. Try Pactster!
There’s a whole of evidence supporting exercise for both adults and children with CF.
One way you could embrace taking on more exercise is by signing up to Pactster. We’ve talked about Pactster before in a previous blog.
Pactster is an interactive online gym! Developed in partnership with the Cystic Fibrosis Trust, it’s a social fitness platform that offers channels of fitness videos for health specific needs, as well as motivational and community features to help people use exercise for both preventative and restorative health.
Because it’s been designed with CF in mind, it’s the perfect solution to taking on physical activity that has been specifically designed for people who have CF – and without the risk of cross infection. Sign up today!