As a twenty year old, at the time, my immediate thought was, “I’ve got a decade to live.” Now, at the age of twenty five, I am a lot wiser and knowledgeable about the illness that has, in so many ways, changed my life and also contributed to the way that I think about life today.

There were many things that I’ve had to adapt to since my diagnosis. A year earlier I achieved one of the highest A-level results for art and design in the UK, and had great ambitions to reach the highest level as a professional and innovative art practitioner. This was to go on hold.

Other psychological barriers included thoughts such as, “will I ever get married? No-one would possibly marry someone with such a short life expectancy,” and, “there’s no way I will possibly be able to get a job.”

The biggest worry was coping with being labelled as ‘having a disability’. Practical issues included getting used to the rigorous treatment program - my bedroom looks like a pharmacy with the amount of medication required for treating the various facets of the illness. Exercising and the dreaded physiotherapy would be an important part of daily routine as well as regular six weekly visits to the CF outpatient’s clinic in Llandough Hospital, Cardiff. Five years on, in many aspects living with CF has become a normality. Such comments as “you should stop smoking love” and “you have a nasty cough” from the general public are a reminder of what I live with.

Since diagnosis I have regularly represented the Welsh disability cricket team, worked with a church doing youth and children’s work in Cardiff and started a kids club in Temba Township, South Africa to raise awareness about HIV/AIDS among children.

As well as completing an Art Media and Design Foundation Course, I am currently doing a BA in Documentary Photography at the University of Wales, Newport, where I hope to do a project looking at HIV/AIDS and perhaps an in-depth project on CF.

I’m pretty confident and motivated in defying the magic thirty one year life expectancy barrier, especially now as I’m due to get married in July 2008 to my fiancée Clare.

In short, living with CF is hard, challenging, embarrassing and often emotionally and psychologically draining - have no illusions. However, it’s also given me opportunities, insight and a realisation that life is about living.

Gareth Kingdon

Gareth is a talented photographer and supplied the images for his article
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WHAT IS CYSTIC FIBROSIS?
Cystic Fibrosis is the UK’s most common, inherited, lifethreatening disease. It affects over 7,500 people in the UK and one person in 25 carries the defective gene, (over 2.3 million carriers in the UK). Each week five babies are born with CF and, sadly, each week three young lives are lost.

People who have CF produce very thick sticky mucus, which clogs their lungs and digestive systems making it difficult to breathe and absorb food properly. Respiratory failure, bowel blockages, diabetes, liver disease and osteoporosis are common complications; at present there is no cure, and currently more than 350 adults and children live with this condition in Wales alone.

Llandough Hospital is the only Adult CF Centre in Wales caring for over 170 adults with CF. Young adults transfer to the adult centre from the paediatric services in Wales at the age of sixteen to eighteen.

The centre aims to provide its patients with the best care, support, advice and encouragement to meet the needs of each individual and their families with this life-long disease.

Their immediate goal is to improve their current services by providing their patients with the modern, often very expensive equipment, which has been developed over recent years to make life not only easier, but also, enable them to benefit long-term from the improved technology which is now available.

With these advances in medicine and technology patients are living longer, with the average life expectancy now 31 years, compared to a few years ago when cystic fibrosis patients would not be expected to live beyond their teen years.

Patient numbers are growing rapidly as is their multidisciplinary team which includes doctors, nurses, physiotherapists, dieticians, psychologist, pharmacist, social worker and a research team. In view of this they are looking at an expansion programme to our centre and the services we are able to offer patients, both now and in the future. To this end, they have launched ‘The Better Life Appeal.’

In the first instance, they are delighted that they have been given six new rooms by Cardiff & Vale Hospital Trust, which are adjacent to the existing centre. However, these need refurbishing and equipping and will eventually provide a specialist nurses room, outpatient treatment room, physiotherapy room, patient gym, clinical psychologist room and finally a notes and storage room. Work has begun on these rooms.

However, £70,000 is urgently needed to complete this first phase of the improvement programme.


Dr R I Ketchell (third from left) and some of the team