Chronic Illness Meets Creativity

Help me, help myself

Growing up with a complex chronic illness often means you rely on lots of other people to help manage your condition. In my case; doctors, dietitians, physiotherapists, and of course my wonderful parents were there to support and guide me - the daily treatments I should take, what activities I should do more of, or what I should avoid - every last detail designed to protect my long term health. And whilst forever grateful for the help I received, there comes a time when one longs for more control.

My name is Marc Cotterill and I was born with cystic fibrosis (CF), a genetic condition that affects more than 10,600 people in the UK, and over 70,000 worldwide.

It’s one of the most frustrating things about living with a chronic illness, the feeling of having no control. Year after year my health would continue to deteriorate despite doing everything I could to keep well. No matter how often exercised, or how well I adhered to prescribed treatments, I felt there was little I could do to stop it in its tracks or at least avoid a nasty surprise. And regardless of my unwavering effort to improve, my next routine hospital appointment more often than not revealed more bad news. I think anyone would agree that summoning the motivation to keep fighting is tough when results don’t go your way, but this is cystic fibrosis - we have no choice, so we go on.

But it was those few months in between my routine appointments where I felt almost blind. Of course, there were occasions where I’d recognize that I felt pretty good - enjoying exercise and working hard with my daily CF treatments - but in the back of my mind I’d be thinking:

What will the numbers say?

The numbers I’m referring to are the key metrics that measure how my condition is progressing - things like forced expiratory volume, also known as FEV1 (the amount of air I can force from my lungs within one second), but also my weight and oxygen saturation for example. The thing is, turning up to appointments to have those numbers checked always felt like an important ‘performance’ that I had to perfect at that moment. Because regardless of how I’ve been doing for the last few months at home, this ‘performance’ and the associated results are what will dictate my next course of treatments, or worse, hospitalizations.

My issue with that approach, however, was that it wasn’t representative of the average of the last two months of my life. It failed to recognize that some days are better than others. I always felt that my healthcare team and I, collectively, weren't looking at the full picture. Of course I was asked questions about the last few months, but my answers were very subjective in comparison to the cold hard numbers which were committed to ink forever.

For a long time this was normal, but I needed something to help me, help myself. I then became aware of NuvoAir; a digital health start-up focused on respiratory care, and a company that believes ‘breathing is everything’. For someone like me - for whom breathing was a conscious effort - I was more than intrigued.

Thanks to Moore’s law, the amazing amount of computing power we all now have access to in the palm of our hands is somewhat remarkable - particularly when I compare today’s standards to those I was accustomed to as a kid growing up with CF in the 90s. It’s easy to forget that back then, to learn anything outside of school (rather than googling, listening to podcasts or turning to social media), a dodgy copy of Encarta 95 was my go-to reference. The idea of being able to call “Hey Siri!” would have sounded like a scene from ‘Knight Rider’ or ‘Back to the Future II."

The same goes for CF tech. In fact, there was no such thing.

The only CF tech I had access to back then was my very noisy, old-school, plug-in porta-neb that provided zero insights into my health, and the coolest thing about it was the Blue Peter Badge on the front. By today’s tech standards, it’s a dinosaur. At the time it was classed as lightweight and portable, but I swear I made more ‘gains’ carrying that thing around than any amount of bicep curls or squats.

Thankfully, however, the world of CF and technology has changed. With NuvoAir at the forefront - innovating to help bring personal technology to people with a range of respiratory conditions - self-monitoring at home is the new normal. No longer do we assess our health based on a single hospital visit via one data point, in sixty-plus days. Instead, we have a constant flow of data that helps us recognize symptoms early and puts the control I always longed for, right in patients’ hands.

Working with NuvoAir

In my downtime, I love to create video content, with a particular focus on sharing key aspects of life with CF. Having learned about NuvoAir, I jumped at the chance to produce a video about the NuvoAir Air Next home spirometer. You can check out the video on my Instagram.

More recently, however, I was given the opportunity to create a promotional video for NuvoAir’s latest innovation - Aos. NuvoAir's Aos sensor brings additional data to the platform enabling the NuvoAir Clinical Team and healthcare providers to assess inhaler technique, monitor inhaler use and evaluate treatment effectiveness. But what I love about Aos is that it puts technology and data in the hands of people with asthma and COPD, giving them more control over their health. You can learn more about it in this article and you can watch the video I created here.

Beyond the clinic

Navigating any illness is a physical and emotional rollercoaster with many surprises along the way. Only those living with the condition really understand the time and energy it demands or what it takes to build a life around it. Yes, we need support, help and guidance, we need our doctors, dietitians, physiotherapists, and of course our wonderful families who do everything they can to make life easier for us, but we also need control.

To those who live with a chronic illness, control means everything. It brings awareness and understanding, and it helps us avoid nasty surprises. It leads to immediate data-driven action and learning, rather than subjective guesses, or blissful ignorance. And ‘beyond the clinic’, it brings a feeling of ownership, responsibility and pride to those of us who rely so heavily on everyone else around us.

This is what I love about the NuvoAir brand and it's why I'm so happy to be working with them. It’s their recognition and understanding of what’s important - where being ‘out of control’ feels like chaos, but to be ‘in control’ brings calm.

I hope you've enjoyed the video that NuvoAir and I have created together. I can’t wait to hear more great stories of patients using the new Aos sensor to help reclaim control of their lives.

Marc Cotterill

Business Architect and Creative

Cystic Fibrosis Patient

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