A photography book of beautiful, intimate portraits exploring the realities of living with cystic fibrosis up to and beyond the median predicted survival rate of 47.
Cystic fibrosis (CF) is a genetic condition that affects around 10,400 people in the UK. It affects the lungs, digestive system and other organs in the body. While CF requires a complex and lifelong combination of medication, treatments and physiotherapy there is currently no cure. It can be an incredibly isolating illness as due to cross infection, people with CF aren’t allowed to meet in person. It’s a life-limiting condition and the average life expectancy is currently 47 years old.
With 47 / A Life With Cystic Fibrosis I set out to study how this number affects the attitudes and opinions of people diagnosed with CF at various stages of their journey. Over the course of a year I visited each person in this book, shot their portrait and chatted to them about their life, their attitude to the condition and their hopes and dreams for the future. I was fascinated to know whether these changed as people approached (and passed) 47. Each portrait is shot in the same style, with the same lighting and presented in black and white. I chose this approach to remove the distraction and focus on the individual in the picture and their unique experience.
CF is a complex, cruel and often misunderstood condition that requires lifelong care while not always having visible symptoms. As such it can be difficult for people to fully understand the severity of the condition. Life with CF requires a daily routine of medicine, treatments and physiotherapy along with a progressive loss of lung function that can often result in a need for organ transplants. It brings a combination of lifelong challenges that can produce incredibly strong and resilient personalities who have to face the realities of mortality every day.
“Simon’s intimate portraits give a unique insight into the lives of some of the 10,400 people in the UK living with cystic fibrosis (CF). This book beautifully captures multiple voices and reveals the reality of living with a condition that shortens life. Although there is no cure for CF, advances in research are helping people to live longer. However, as these stories attest, CF remains a daily challenge.”
Anne Shinkwin, Director of Fundraising at The Cystic Fibrosis Trust
As a dad of a 2 year old who was diagnosed with CF at 3 weeks, I’m incredibly proud of this piece of work. It represents a year of my life and a journey that I, like the people in this book, never expected to find myself on. What I’ve learned is that while CF is unforgiving, relentless and unbelievably cruel it also creates strength, resilience, defiance and an appreciation of life that many of us can only ever hope to find.
For every book sold, 25% of the profits are donated to the Cystic Fibrosis Trust to support the incredible work they do every day to support those affected by CF and to help work towards a cure.
Unsung Hero Award at the AP Awards 2020
In February 2020 I had the absolute honour to attend the Amateur Photographer AP Awards to receive the Unsung Hero Award in recognition of my work on this project.
The Unsung Hero Award is a new award ‘designed to celebrate the hard work and community spirit of people who are using photography for the benefit of others or to help make the world a better place’.
I had a feature spread in Amateur Photographer Magazine focussing on my work. In addition, the award sponsor Ripe Insurance have kindly donated £1,000 to the Cystic Fibrosis Trust. The donation is a fantastic addition to the amount already raised from sales of the book.
You can read more about the Unsung Hero Award on my blog.
Press coverage
47 / A Life With Cystic Fibrosis was published to 5 star reviews following a hugely successful Kickstarter campaign that smashed it’s target in just 8 hours. In December 2018 I was invited onto BBC1 Yorkshire to talk about the book project as well as cystic fibrosis in general.
In June 2019 I was interviewed by the Daily Express for an article on the book.
Want to know more about what goes into producing a book?
You may be interested in my blog post Reflecting on 1 year since the release of ’47 / A Life With Cystic Fibrosis’. This was written on the first anniversary of the book going on general sale and reflects on both the project itself and the events that followed.
Looking for a commercial portrait photographer?
To discuss a photography brief please get in touch to talk through your requirements. I’d love to work with you!
