“You are worth something, you offer something, and you contribute every day”: James’s story

When were you diagnosed with cystic fibrosis?

I was initially diagnosed with CF when I was 16, after having struggled all my life with my breathing, exercise and expectorating sputum, but being pancreatic sufficient had made the diagnosis more difficult to initially detect. When I was 13, I told my family I thought I had CF, but I had no confirmation on this from doctors until three years later. 

How does living with CF affect everyday life?

When I was younger, CF was frustrating for many reasons, including playing sport, international travel, and the ability to be spontaneous. As I grow older and my condition deteriorates, it affects me in more seemingly banal ways, such as being unable to carry something heavy in the house or dig in the garden. I was lucky when I was younger to travel extensively and have visited 46 countries; however, international travel has now become more of a challenge, so that is also frustrating. 

What is the biggest challenge?

The biggest challenge in having cystic fibrosis is two-fold – relationships and self-acceptance. These two very much go hand in hand, because CF forces you to consider the future, and how your decisions impact other people's futures. The idea of bringing a long-term partner into your traumatic and complicated life can feel incredibly selfish, and you can end up pushing people away, or hating yourself for just wanting to be loved.   

What would be your advice to other people living with CF?

My advice would be that anything is possible, whether that’s skydives, having children, or just being able to walk across the room unaided. Whatever your current goal is, it can be achieved with belief, positivity and the support that you have from your family, friends, home healthcare support and everyone in between.

Never give up on whatever it is that you want to do and be confident that this disease will be beaten soon.  Know that you are worth something, you offer something, and you contribute every day whether consciously or subconsciously. 

What are your hopes for the future for CF?

I have a number of hopes for CF, with the first being that we find a cure for it as soon as possible. I also hope that people realise Kaftrio isn't a cure; people are still ill, their lungs are still scarred, they still fear getting the flu or a chest infection and they still struggle to have children. Finally, I hope that every single person that cares for somebody with CF are recognised for the heroes that they are.

What does Cystic Fibrosis Trust mean to you, and how has the Trust supported you on your CF journey? 

Cystic Fibrosis Trust are fantastic, and they have contributed to my life in different key moments. They offered me support when I was diagnosed, and I received a grant of £1,000 toward my first office space when I started my first business. I have also had the opportunity to be part of many schemes and contribute to multiple projects that are helping people with cystic fibrosis.

Why is more research into CF so important?

Research is pivotal in the fight against CF, and I implore anybody reading this to contribute in any way that you can, financially, with your time or through sharing this on social media. 

Cystic fibrosis (CF) is a genetic condition which causes sticky mucus to build up in the lungs and digestive system. It affects more than 11,000 people in the UK. One in 25 of us carries the faulty gene that causes it, usually without knowing. 

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