Charlie’s story: “I want to bring cystic fibrosis to mainstream awareness”

Hi Charlie! Can you tell us a bit about your CF diagnosis and what it was like growing up with CF?

I was born in Singapore. When I was a baby, my mum would feed me and I would just throw it back up. Because cystic fibrosis was seen as a western condition, my mum saw several doctors in Singapore, but they didn't know what the issue was. She flew me back to the UK and took me to Southampton General Hospital where I was diagnosed.

Happily, I don't think CF really played much of a part in my childhood other than hospital check-ups every few months and a bit of physio here and there. I'm very grateful to my parents and the way they raised me; they taught me that I’m a person first and foremost, and CF and everything else is secondary to that.

How does CF affect you day to day?

For me, life is very different before and after Kaftrio. I’m really fortunate I’ve been very lucky with CF and only ever needed three courses of intravenous (IV) antibiotics, but before Kaftrio I would have to do physio morning and evening. I would be coughing a lot on a daily basis and wouldn't be able to laugh without coughing. Now I’m on Kaftrio, I've been able to reduce the amount of physio I do*. I still do it in the mornings, but quite often it will feel like I haven't really needed to, and I have a lot more leeway.

It feels like I’ve been given the gift of time. Very often you hear people say, if only I had a few more hours in the day, and I was literally given that. It was a very strange and wonderful thing! Kaftrio gives me more independence, more spontaneity, and just confidence that I'm more resilient now.

*please consult your CF team before making any decisions about your treatment regime

Tell us about your play. Where did your inspiration come from?

It's been in the back of my mind for many years to create something to do with CF. Towards the end of last year, I was looking ahead to 2022 and thinking back on the pandemic and how it really gave me a fresh perspective. I think lockdown gave us all the opportunity to take a step back and get off the constant treadmill of life. I also think that Kaftrio is a major factor in giving me the confidence to write the play, because I think without it, writing a play about my experiences with CF would have been a bit too close to the bone.

The play is called WONDER DRUG: A Comedy about Cystic Fibrosis and it’s a one-man show. The core content of it is a course of IV’s that I had in Summer 2020 which I use as a lens through which to explore CF more generally. It was a tough time for many reasons, but it's also an episode that encapsulates a lot to do with CF. I was still shielding from COVID-19 during the IVs so I had to be taught how to do them myself for the first time. At this time, I had also just started seeing someone I'd met just before the pandemic and a month into us going out, I had to go on IVs. I wanted to give a healthy impression of myself and obviously didn't want to scare her off so that was really tricky.

This leads to another key theme of the play, which is the relationship between physical and mental health, something I don't think is talked about enough. My play shines a light on the more human element of medical conditions. I'll be playing personified versions of some of the medicines I take. I'm exploring if these tablets were people, what would their personality be? How would they behave? I want it to be a really fresh look at our relationship with health.

You say you based the play on your life and your experiences with CF. Did you find writing the play was a positive experience?

There have definitely been times where I’ll be writing a scene, and it's only when you're in it that you think actually this is more difficult to write about than I thought. It's not like I've been approaching it with caution, I've just been sort of plunging in and then thinking OK, maybe just take care of yourself mentally.

It's a comedy and there are lots of fun sequences in the show, but in order to write it, you still have to engage with potentially darker stuff. What the audience sees will be the tip of the iceberg in terms of the thought and potentially some emotional difficulty that has gone into creating it. Another crucial thing about the show is that, yes, it's called WONDER DRUG and yes, it's celebrating Kaftrio, but what I'm aiming to do is to use this incredible milestone for cystic fibrosis to show the audience what medical research can achieve, but also that we still have a long way to go in terms of making sure that everyone, no matter their genotype, can have access to a similar medicine.

I’m also trying to show that even for people on Kaftrio, there are still daily difficulties and long-term implications. It demonstrates what medical research can achieve, but what I hope is that the audience might come away with a sense that there's still a long way to go, so it is worth putting our time and money and effort into helping with these causes.

What would you like the audience to take away from the play?

I want to bring cystic fibrosis to more mainstream awareness, and show that we are all people first and foremost, with labels such as ‘disabled’ being secondary. I’d like to engage with the idea that yes, the daily routine may be different and the perspective on life may be different, but we still go through the same silly experiences in life no matter what we’re dealing with. For someone who may not know much about CF, I want them to see what is possible and the problems we can solve if we give people the support and money to do so.

WONDER DRUG: A Comedy about Cystic Fibrosis, is due to premier at the VAULT Festival in London, on 15 and 16 February at 9:45pm. It will be livestreamed so that people with CF can watch the show, or anyone else who might not feel comfortable attending in person.

You can follow updates on Charlie’s play on Twitter at @WonderDrugPlay and Instagram at @wonderdrugplay.

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