National Charity
 Local Charity

About Cystic Fibrosis

Cystic Fibrosis (CF) is the UK’s most common life-threatening, inherited disease. More than 7,500 babies, children and young adults in the UK have the genetic disease, that affects a number of organs in the body (especially the lungs and pancreas) by clogging them with a thick sticky mucus.

This mucus is easily infected, scaring the lung tissue and, each time, reducing a person’s lung capacity. Sufferers have to undergo vigorous physiotherapy everyday to keep the mucus moving, to decrease the chances of infection. Sufferers can spend a great deal of time in hospital and due to the likelihood of those with CF cross-infecting each other, sufferers are not able to meet. At present there is no cure for CF and the average life expectancy for someone with the disease is around 31 years.

Statistically, every 25th person is a carrier of the CF gene. It requires two carriers to pass on the gene to their child. The odds of a couple both with the CF gene and passing the disease to their child is one in four.

So what does this actually mean to those with CF?

In relation to my nephews this means extended periods in hospital, where at such a young age they are in an isolated ward for what can be weeks at a time – so they can’t play with the other children in the hospital, visit the childrens play room or even attend any classes organised by the hospital for those children who are missing school.

Whilst my nephews have been relatively fortunate to date with the amount of time they have spent in hospital, during his last visit Aiden had a particularly nasty infection that could only be treated through antibiotics administered through IV. This had to stay in his arm for two weeks. During this time my sister-in-law had to be taught how to mix the appropriate dosage of medicine, quite a scary thing when maths isn’t your strong point, learn how to clean the IV line and administer the medicine through the IV three times a day.

Even when they are ‘well’ they can require up to five different medicines to be taken at different times of the day. This impacts on their everyday lives from visiting friends to weekends away. If they visit friends without their parents for any longer than a few hours those looking after them have to be briefed as to what to give and when – it’s no easy task. Nebulizers in the morning and evening, enzyme tablets during meals and snacks, special dietary requirements, breathing exercises and phsyio up to three times a day – are all standard. If they are on antibiotics to treat an infection the medicines have to be kept refrigerated which makes going out difficult. Then, of course, there’s being able to recognise the symptoms for when they aren’t feeling well.

While I could go on forever more I just wanted to highlight the two issues that I would like to ask for you help to support.

1). There is currently no cure for CF and the average life expectancy for someone with the disease is only 31. That’s how old I am now, and I’m definitely not ready for it all to be over yet, so for that reason alone I would ask you to sponsor me to help fund the CF Trust's ongoing medical research to find a cure.

2). The short-term, whilst a cure is being sought, monitoring and improving the medication and treatment available to those with the disease is imperative for the quality of their day-to-day life and for increasing their chances of survival, when a cure is found. Each time the lungs are infected they are scarred. With each scarring the lung capacity is reduced. The CF Trust has isolated the faulty CF gene and its research lies in correcting this to find a cure. Its research, does not extend to reversing the damage done to the lungs by the disease and, therefore, in order for a cure to be of use to Aiden and Morgan and the other thousands of children in the UK with this disease, they need to keep their lungs as healthy as possible. That’s where the work of CF Kids of Portsmouth comes in. They are looking to raise 76k for a spirometry machine, which will monitor lung capacity of the children in the local area and detect infections at the earliest opportunity to minimise the scaring to the lungs.

For more details about my two chosen charities click on either of the logos below.

About my two chosen charities: (Click on a logo, to find out more)