Adapting to a new adventure: Alison’s story
Alison is the duty manager at a local cinema in her hometown of Daventry. She is married and has a teenage daughter. Alison took some time out of her day to share her story with us.
Can you tell us a little about yourself and your CF journey?
I was diagnosed with CF when I was six years old, but up until that point, my parents knew something was wrong. As a baby, I was failing to thrive, but we lived abroad as my dad worked in the military. For years they knew something wasn’t right, but I was only seen by a CF specialist when I turned six.
And ever since then, I’ve been following strict medical regimes of physiotherapy, tablets, medication and hospital stays.
I was a relatively healthy teenager, and as a young adult, I worked full-time until I became pregnant with my now 13-year-old daughter. After having her, I couldn’t work full-time as my health started to decline.
Raising a child, dealing with hospital stays and having a career wasn’t manageable for me, so I took several years off work. But I am so grateful to have had that time with my daughter instead.
After a while, I did venture into part-time work, but that became a struggle as my lung function had declined to around 50%.
How did you find starting Kaftrio?
It’s been a miracle drug for me! I’ve been on it for three years, and it has turned my life around. I now have a very stable lung function, and I’ve never been so healthy. I can even walk and talk at the same time, something I struggled with beforehand.
How did you get into your area of work?
Around the time I started Kaftrio, I saw that a new cinema was opening in our town, creating quite a buzz! I decided to apply for the duty manager position on a whim, completely expecting to get a rejection. But I was blown away when I was offered the position, and I couldn’t wait to start.
While this role is unlike anything I have done before, I love people, and my community, and this company was so focused on those areas, so I knew it would be the perfect place for me to work.
From the first day, I hit the ground running. It was a busy few months, with hardly a moment to pause. I was high on life, and everything was great.
The only issues I faced during the first year were COVID-19, which I bounced back from after three to four days, and a minor chest infection, which I managed very well. More recently, I have been dealing with kidney issues which have required me to take more substantial time off, but my company has been great. When I first told them about my CF, they were wonderful.
The challenge with taking time off has been managing money. When you take more than a few days off, you have to rely on statutory sick pay, which can be hard to navigate when unwell.
What does an average working day look like for you, and how do you manage your CF?
No day is ever the same. One moment I could be dealing with a delivery of popcorn or sugar, and then next, I could be doing building checks, testing our fire alarms or sorting out the till.
I also have to physically check each cinema screen from top to bottom, and I can do it without getting out of breath, thanks to Kaftrio.
Throughout the day, I am busy with stock, customers and cleaning - there isn’t much that I don’t do. I’m on the go all day and average between 13,000 and –17,000 steps daily.
Managing my work and CF can be tricky, but it’s all about having a routine. I make sure to fit in all my physio and meds around my job, and I am also very good at listening to my body when it’s tired and needs a break.
How would you describe your job in three words?
Fulfilling, energetic and satisfying!
What do you love most about what you do?
The people. Where I work is so much more than a cinema. We have a room that we hire out to the community to hold events, and it’s a real highlight for me as I love engaging with different groups of people.
This job has been such a lifeline for me. Before starting Kaftrio, I was pretty sure my health wouldn’t get better, and I could see the trajectory I was going down, which led my mind into dark places at times.
But this job, working as a duty manager for a genuinely wonderful cinema, has allowed me to see what a ‘normal’ life looks like. It’s also allowed me to realise what I am capable of and what I can contribute to my colleagues, my family and my community. It’s a great feeling, and I feel very lucky.
What are your hopes for the future?
My mission is to stay as well as I can for as long as possible and see my daughter grow up.
I also hope that Kaftrio continues to help those who are able to have it, and that further treatments are developed for those who are unable to take it.
As part of Work Forwards, we'd like to share the stories of people with CF in a wide range of jobs. We look forward to involving as many people with CF as possible in this – if you have a story you’d like to share about your job or experiences of employment, please do get in touch with us at [email protected].
Cystic fibrosis (CF) is a genetic condition which causes sticky mucus to build up in the lungs and digestive system. It affects more than 10,800 people in the UK. One in 25 of us carries the faulty gene that causes it, usually without knowing.
Since 1964, we've supported people with cystic fibrosis to live longer, healthier lives - and we won’t stop until everyone can live without limits imposed by CF.
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