May is Cystic Fibrosis month. Learn more about Cystic Fibrosis and what we can all do to raise awareness and support the journey towards a cure…
The Cystic Fibrosis Foundation has designated May as CF awareness month. This life-shortening inherited disease affects almost 10,000 people in the UK and 30,000 in the United States.
What is Cystic Fibrosis?
Cystic Fibrosis comes from a faulty gene that controls the way salt and water moves in and out of cells in the body. This means the lungs and digestive system gets clogged with mucus. Breathing and digesting food becomes increasingly difficult as the disease progresses.
At the moment there is no cure for Cystic Fibrosis but the condition can be managed with medication, exercise, physiotherapy and nutrition. Today data from the Cystic Fibrosis Trust estimates that, “More than half of the CF 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.”
Because Cystic Fibrosis is a genetic disease it can’t be caught or developed. However, one in 25 people carry the faulty CF gene which could be a consideration if you are thinking of starting a family.
Being screened or tested for Cystic Fibrosis
There are a number of different types of testing and screening that can be done to identify Cystic Fibrosis depending on your age and situation. If there is a history of the condition in you or your partner’s family then you can be tested easily by taking a sample of the cells from the inside of your mouth. The cells are then tested in a lab. Couples often decide to be tested before starting a family. This can be organised through your GP or if you have health insurance through a private provider.
Bupa’s Health Information Directory gives a comprehensive list of facts and advice on Cystic Fibrosis and pregnancy including the antenatal test Amniocentesis and Chorionic villus sampling. All new-born babies are screened for Cystic Fibrosis in the UK. A midwife will visit you and your baby about five days after the birth and collect a few drops of blood to be tested. Since some tests can provide inconclusive results there are three in total that can be used to determine if a baby has Cystic Fibrosis. The other two are sweat testing and genetic testing. This first test reads the level of salt in a baby’s sweat as people with CF have very high levels in their sweat. The second relies on a sample of saliva taken from inside the baby’s mouth. This test can confirm if a child has CF or is a carrier of the gene.
How can I help?
Cystic Fibrosis charities are always looking for willing volunteers to help them raise awareness and funds to support research into a cure and also help provide support and respite for people living with the condition. You can donate your money or your time by joining an event or organising your own. Companies often donate money to charities or organise team building events around raising money for good causes. It could be as simple as organising a bake sale at your office or as grand as suggesting your local or national Cystic Fibrosis charity be adopted as their national charity as Manchester United did for three years.
Has your company or workplace ever raised money for a Cystic Fibrosis organisation?
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