Jack’s story: Being a professional dancer with CF

Diagnosis and growing up

When I was born, I wasn’t putting on a lot of weight, and my mum knew something wasn’t right. They did the sweat test on me, which didn’t indicate anything was wrong, but two months later, my mum took me back, and I had another sweat test, which diagnosed me with cystic fibrosis.

Growing up, I’ve had my dips, but overall, I’ve been okay. My mum got me into sports when I was young; she knew I needed to stay fit and active. She put me into swimming classes, so I did a lot of exercise.

In school, I remember there was a kid in the year below me who had CF, too, and my mum always instilled in me that we weren’t allowed to socialise or be close to each other, so I remember that being something significant in school. I was quite open with my CF to begin with, and I don’t think many people questioned it, but once I got to dance college, I didn’t tell anyone. I didn’t want to be judged for having it and wanted to be treated the same. I didn’t want a scenario where I maybe coughed in class and was made to feel different because of it.

As time went on, it felt a bit weird to turn around and go, ‘Oh, by the way, I have CF’. But nowadays, all the people close to me know about it.

Kaftrio

Kaftrio has been bittersweet for me because I’ve luckily always had an okay chest, and when it first came out, so many people online were saying how they could suddenly breathe so much better. The biggest difference for me has been that I always used to have to clear my throat. I would wheeze, and it felt like there was a frog in my throat, but now I don’t have that anymore. It has changed my life a lot, though. I used to take a lot of different tablets for different things, and now I don’t need as many tablets, especially things like Creon.

When I first went on Kaftrio, it was lockdown, and I remember putting on a lot of weight. I looked in the mirror and was like, ‘Oh my god, I’ve got a back roll!’. The first few months, I remember feeling really anxious. I used to get wound up a lot, but that’s all calmed down now.

Dancing

As I said, I used to swim a lot, and my mum used to come and watch with the other parents. I always used to dance by the side of the pool. People would ask my mum about it, and she told them I did it all the time at home, too. They told her she should put me in some dance classes, and she agreed it was a good idea. I was eleven when I started dancing, and it’s progressed since then.

I remember everyone deciding where to go for sixth form and choosing their A Levels. But I wasn’t sure what I wanted to do; I only enjoyed dancing. A teacher asked me if I would like to do dancing as a job because I was at the dance studio all the time, and from there everything fell into place. Now I’m a dance teacher who choreographs and performs, too.

Juggling dance and CF

I’m always on the go, so when I do get ill, it hits me hard. There are some days when my body’s just done, and I can’t be bothered, and then I get in my head and start to beat myself up because it’s hard to tell if I’m being lazy or I’m actually really tired because I have CF. I’m self-employed, so if I don’t go to work, I don’t get paid, and I don’t get sick pay either. I’ve learnt over the years that during half term, I need to take some time off. I find that by the time half-term comes around, I’m exhausted and unable to get out of bed, so I really need the rest.

Starting ‘Just Believe’

When I used to tell my friends that I had cystic fibrosis, they used to go, ‘What is that? Is it like cerebral palsy?’ No one really knew what cystic fibrosis was, and even when I explained it to them, they still didn’t get it. Even the people who do get it just think it’s just a respiratory illness and don’t really know that it affects so much more than just the lungs.

I started a company called 'Just Believe', which raises awareness and money for cystic fibrosis. We sell hoodies and put on dance events. So far, we’ve raised two thousand pounds, and many more people around me, including those I work and socialise with, already seem to know so much more about CF and don’t ask silly questions.

Even the kids I teach come to my class after school and say, ‘We learnt about cystic fibrosis today,’ and they ask me about it. It’s nice to see everyone accept it.

Choreographing a dance for CF awareness

I was recently approached by an American production company called 'Cinema Veritas' and asked to take part in their event “Salt of the Stage”. This event features artists from all around the world who have cystic fibrosis. I was asked to film a dance video, and through the video, I highlighted my daily struggles. I choreographed the dance to the song ‘Broken and Beautiful’ by Kelly Clarkson, and the video has gained 10 thousand views on Instagram so far.

The feedback has been lovely on the whole. I think because I’m so low-key about my CF, it’s been pretty weird seeing the response. I got a message saying I was going to die because of CF, and it hit me hard because you sit and think about it and realise you’ve got this condition, and it can be really scary, so sometimes you just have to take a breath and put it all in perspective.

Advice to a younger person with CF

Listen to your mum when she says exercise is good for you! Also, as hard as it is, stay positive and try not to dwell on it. When you do sit and reflect on your CF and how it affects your day-to-day life, it can get you down, but you need to live life and not let it hold you back. If I had sat and dwelled on it too much, I wouldn’t have gotten to where I am now.

Past research, funded by our incredible supporters, has transformed the lives for many in our community. We’ve made some incredible progress. But we still have so much to do.

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