Cystic Fibrosis (CF) is the UK’s most common, life-threatening, inherited disease.
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It affects vital organs in the body, especially the lungs and pancreas, clogging them with thick, sticky mucus. The lungs become progressively more damaged by bacterial infections as a result of this mucus clogging. There is no cure for Cystic Fibrosis, and the life expectancy is around 30 – there are approximately 7500 Cystic Fibrosis patients in the UK, of which 6000 are under age 25.
Treatment is aimed at preventing the build up of mucus to slow the progression of the disease and is an arduous, time-consuming daily routine. Chest physio is performed at least twice daily, every single day, followed by nebulised drugs to treat bacterial colonisation of the lungs. All food and snacks have to be accompanied by enzyme capsules, without which food cannot be digested. Most CF patients take around 40 plus tablets a day of various types. Apart from the time consuming daily treatment, CF patients have frequent hospital visits, including courses of intravenous antibiotics (these are often done in the home setting). Fitting ordinary daily activities such as study or play around treatment schedules can be difficult for the CF child, and the strain on the family as a whole (particularly any non-CF brothers or sisters) can be considerable.
The Southend Cystic Fibrosis Association aims to provide equipment and services to improve the quality of life of those with CF in the Southend area (Essex, UK). We are a registered charity and we are reliant on fundraising events and individual donations, as we receive no Government funding. Running costs of the charity are nil as the committee are all volunteers, many of them being CF parents. Examples of what we provide are nebulisers, in-flight oxygen, trampolines and exercise equipment to improve fitness, and prescription payments (unbelievably, CF does not qualify the patient for free prescriptions, as when the list of exempted conditions was decided on, the life expectancy with CF was only around 6 years and this situation has never been rectified!)