"Developments in medicines and treatments...allowed me more time instead to think about who I want to be" - Will's story

Diagnosis

I was diagnosed with cystic fibrosis a couple of weeks after birth - I was lucky Nottingham was one of the first to get the heel prick screening and so my CF was picked up very early. From that point on, my parents were really on top of all the treatments and it helped that my mum was a neonatal nurse and so already in that world. I was raised with a diligent outlook on treating but she would say; “CF fits around out life, we don’t fit our life around CF”.

Health and Kaftrio

I was relatively healthy as a child and didn’t get admitted for IV antibiotics until I was about 11, and then from that point I was in and out of hospital and that became routine. I ran the marathon for the Trust in 2015, before I started Kaftrio, and though my current exercise routine pales in comparison, it shows that I was relatively healthy before that.

In 2018 I started taking Kaftrio on a clinical trial, and haven’t been admitted to hospital since 2017, or needed oral antibiotics. It settled a lot of my symptoms, including my digestion and coughing, though didn’t have a huge impact on my lung function (though that was always quite high anyway.) 

It’s difficult to know if side effects that happened afterwards were due to Kaftrio or other reasons, but I do think it had some effect on me. I had some mental health difficulties after about three months. I’ve managed it over the years, but it could have been the stress of the trial bringing it back on. The trial was initially supposed to be one year, and then extended to two and I wasn’t sure if I could commit. I became stressed about moving, work, family, and it felt like a lot of weight was on my shoulders, but my CF team, particularly my CF psychologist, helped me through it. 

I also had a bit of hair loss too, which initially wasn’t much of a problem, but I came out as non-binary in 2023, and wanted to grow my hair out and have more of a femme look. So this has been difficult for me, and it’s been a bit upsetting. The dates for this align with Kaftrio, so it could have been an influence. 

Despite that, the difference it’s made to my health, and the headspace that CF takes up is huge. In 2018 I launched a podcast at the UK CF Conference called Straight From the Lungs where I interviewed lots of people from the world of CF. When I started it, CF felt like a bigger part of my life and as much as I am happy to be talking about it today, I barely ever think about it. For 27 years my physiotherapy took up most of my mornings and evenings and now I do it once a day.

So, Kaftrio has been amazing, but it hasn’t solved everything. I don’t know if I’m in the category of people who need intervention to have children, and there are lots of other possible complications of my CF that might need attention in the future. There’s still people who can’t benefit from modulators, and who have side effects, and other people have things like antibiotic hearing loss which isn’t suddenly going to be fixed. Sometimes it’s easy to see Kaftrio as a cure, but it isn’t and CF needs as much attention as it did before modulators.

Meeting my wife, Vicky

I went to university to do animation, which is where I met my now-wife, Vicky. We were on the same course – she did illustration and I did animation, but there were crossover points and group projects. We got to know each other, became best friends and ended up falling in love. 

She grew up with a next door neighbour who had CF, so she knew a bit about it already, though they were quite ill with CF, so it was a different story. When I first went into hospital at university, and we were friends, we spoke quite a bit and I would send her photos of what my room was like. 

When we started going out I wanted to talk to her frankly about CF and what it is. Funnily enough, what I said then is somewhat out of date because of Kaftrio. I told her I might not live as long, children might be difficult, physio takes up a lot of time, and I might have to go into hospital, and she was very accepting. 

I had a few admissions after that where she was fully at the front of it and was there when I was admitted. I think she was a bit scared, but we got through those darker times earlier on, and though it was a bit of a crash course in CF, she passed with flying colours. 

At the start of 2018 I proposed, and in November 2022 we got married. It now feels like we’ve been married a long time (in a good way!).

Working in animation

After graduating with a first, I was lucky to go straight into a job full time for Ember Television in Birmingham. That was the first time I’d had proper job that you had to go to 9-5. I met some lovely people there, two of whom became my groomsmen. 

Around eight months after I started, I had to go to hospital for IVs, partly from being burnt out from working a fulltime job, and decided to go freelance so I could keep working for them, but be more in control of my health. It allowed me to take mornings off if I was tired, or not worry about becoming sick and missing lots of work. 

I’ve been lucky enough to work on a lot of cool projects, including doing a title sequence for the BBC Christmas Lectures. My wife did the illustration and I animated them. At the wrap party, I met a YouTube content creator called Tom who I’d watched quite a bit of and said that I could animate for him.

A month later I got my first project and then it just went from there. Now science communication is a big part of my work. The pandemic partly helped to influence this as kids had to do a lot of distance learning and I wanted to do something to help out. 

I released my first 3 videos and started Learning With Will, a series of engaging videos on a variety of school subjects. I get to bring myself into it a bit, because I made a video about genetics and used myself as a case study, explaining how my brother and parents are carriers. 

Looking to the future

Developments in medicines and treatments have given a lot of people a new lease of life, whereas for me, it’s been more of a stabilisation of my CF, and allowed me to focus on other things. It allowed me more time instead to think about who I want to be, and my gender identity, and also allowed CF to fade into the background of mine and my wife’s minds, which is hugely positive for us both.

You can watch the Learn with Will video on genetics here