Jordy's story: “There is space for you – sometimes you just have to find it”

What’s your journey with CF been like so far?

I’ve faced many health issues with my CF, but the real problems started when I caught flu in 2017. My health started to go downhill, and I ended up being referred for lung transplant. I spent 2018 until 2020 getting assessed by the incredible team at Freeman’s in Newcastle. At this point I went part-time at work, barely working when in hospital, and I kept losing weight, struggling to walk up hills or dance on a night out.

I decided the best way to cope was to document this in my work and use it to channel my frustrations and issues in a therapeutic way. I did a drag show about lung transplants in CF called The Honeymoon Period in 2020, just before the pandemic, which won an award. It was even praised by the First Minister, Nicola Sturgeon. Then, on compassionate grounds due to me needing lung transplant, I started taking Kaftrio, and my whole life changed.

What difference has Kaftrio made to your life?

The effects of Kaftrio for me were instantaneous. Within hours of the first dose I was clearing my throat and so much mucus (ew, I always squirm saying that word – even at 27!) was coming up. I gained weight quite drastically, and went up three dress sizes – which was brilliant for my cystic fibrosis, but my drag wardrobe needed a good clear out! We went into the pandemic two weeks later, and I was isolating and shielding, so it was like I was given a new car and couldn’t take it out for a test drive. Kaftrio has also stopped me (for the time being) needing a lung transplant. It’s given my health the reset I needed to explore new and exciting things in my work.

Moving on to your work! Can you tell us about your life as a performer – and how you balance it with CF?

This year marks seven years I’ve been doing drag professionally. It’s going to be the last, as I’m starting to explore a new career as a non-binary artist and singer in 2023. On average, it would take me two hours to get my make up on and transform myself into my old brand as The Real Housewife of Leith. I’ve done some truly wonderful things. I was commissioned by the National Theatre of Scotland to make a short film called Dear Deelight, had my work featured with the BBC, and got to perform alongside a number of celebrities.

I would be lying if I said it’s been easy finding a balance. I even struggle now with that. But what I would say, as a singer, is take care of yourself, voice and body. And your mind – your mind needs as much self-care as your body.

You often talk about CF in your shows; what do you think is the importance of raising awareness of the condition?

We are living in the new age of modulator drugs which is exciting. However we know that some people with CF still can’t benefit from the modulator drugs, so we need to keep channelling our efforts into helping those people. If I hadn’t been given Kaftrio when I did, I might not be here to fill the world with joy and colourful make up. I encourage everyone to do your best in supporting the Trust and the efforts they go to in terms of research for the world of cystic fibrosis.

Thanks for your support, Jordy! If you had one bit of advice for a young person with CF today, what would it be?

I’m a big believer in always listening to your gut. In any situation, it never lies. Let yourself make mistakes, you are not perfect, perfection doesn’t exist. And always remember if you feel different and you don’t belong, there is space for you – sometimes you just have to find it. That takes time, energy and a boss soundtrack of sassy tunes.

Looking to the future, what are your hopes and dreams?

I’ve been busy putting together an EP, which I hope to release soon. I’m ready to get out there, meet people and travel. I’m writing a book about my life and all the negative experiences and failures, and how they shaped me and who I am today. In 2023, I will be doing my last drag show, which was funded by Creative Scotland. It’s called 12 WEEKS, and it looks at my life during lockdown and shielding. And then… who knows? As Donna Sheridan said in Mamma Mia 2: “Life is short, the world is wide. I want to make some memories.” For the CF community, I dream of the day we have treatments that could repair the damage in CF.

Thanks so much for sharing your CF story with us, Jordy!

Everyone with CF has different needs, but if we join together we can make change happen.

Will you unite with us and the entire CF community this festive season so we can keep funding our vital work, that could bring improved treatments for people with CF like Jordy?

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