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But at the back of my mind there is always a number - the average life expectancy for someone with my disease. I do, but thankfully my younger brother Nick, and elder brother Alex, don't.

When I was diagnosed at five, the average life expectancy was 17, but each case is different.

The effort of keeping fit and to a professional standard actually improved my health. I was able to double my lung capacity - a crucial measure of my fitness - from 1.5 litres to three litres.

I liked the physical challenge, but decided to return to Kingston to do a postgraduate diploma in psychology, at the same time working two days a week in the prison service.

There were a few times when I was too ill to go to school but I still got two A-levels and a degree in psychology at Kingston University, in South-West London.

Students treated me no differently to anyone else, even if my housemates in Kingston could tell when I was in by my coughing.

When I was diagnosed, I was not expected to make it into my 20s.

Every day since has been worthwhile and all the better for their support.

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This might sound odd, but at 23 I retrained as an aerobics teacher.I love new sports and I've been whitewater-rafting, tandem sky-diving and bungee-jumping in Australia. When I'm asked what is the worst part of my illness, I'd have to say the exhaustion.The rigorous exercise and physiotherapy regime required to help loosen the mucus on the lungs would tire anyone.In my early 20s I worked for the publisher Haymarket, but a severe infection brought on by my illness forced me to quit.Abandoning my career was the hardest decision I've made, but there was little choice.

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