47 / A Life With Cystic Fibrosis is a series of intimate portraits of people living with CF and offers an insight into their attitudes to life and their condition up to and beyond the median predicted survival rate of 47.
Each portrait is shot in the same style, with the same lighting and presented in black and white. Alongside each portrait is a short extract from our conversation during the shoot that offers an insight into the individual in the photograph.
The choice to shoot all portraits in a consistent style is to remove distractions and focus on the individuals and their unique experience of living with CF.
I’ve spent over 8 months travelling around the UK visiting people living with CF, getting to know them and shooting their portraits and this book is the culmination of that experience. My hope is that this body of work will raise awareness not just of Cystic Fibrosis as a condition, but the real-life impact CF has on everyday life.
As a dad of a 2 year old who was diagnosed with CF at 3 weeks, this project is something I’m incredibly passionate about and I think the final product is a beautiful, powerful piece of work but I need your help to get the final book to print. I’ve set up various rewards for those of you that pledge so there’s plenty of ways for you to help, even if you can only afford to donate a few pounds.
As a backer, you’re guaranteed to receive an advanced copy of the book with any pledge of £18 or more.
After this campaign I’m going to be donating £5 to the Cystic Fibrosis Trust for every book sold to support the incredible work they do both in terms of medical research but also offering support not just to CF patients but to their friends, families and colleagues. We’ve experienced first hand just how important their work is and it’s a cause very close to my heart.
If you can help me reach my goal please give what you can. I can’t wait to share this project with you.
What is Cystic Fibrosis?
Cystic Fibrosis is an inherited condition caused by a faulty gene. You cannot catch Cystic Fibrosis, or develop it later in life. People with CF are born with it and will have it for life. It’s a genetic condition that affects more than 10,400 people in the UK. It affects the lungs, digestive system and other organs and can cause chronic infections and reduced lung function. It’s a life-limiting condition and the median predicted survival rate is 47 years old.
The Cystic Fibrosis Trust are working towards a brighter future for everyone with CF by funding cutting-edge research, driving up standards of care and supporting people with the condition and their loved ones every step of the way.
To find out more about Cystic Fibrosis and the incredible work that the CF Trust do please visit https://www.cysticfibrosis.org.uk.
I’m a full-time freelance web developer and photographer, husband, record collector and dad of three. My youngest, Ellis, is 2 and was diagnosed with Cystic Fibrosis at 3 weeks old.
My love of photography started at a young age on discovering my Dad’s old camera equipment from the 1960s. As a child I built a darkroom in my bedroom where I discovered the real magic of photography and a fascination for capturing moments in time in a fraction of a second. My passion has continued through to adulthood and is often driven by a desire to document my growing family with a quality befitting the importance they have in my life.
Since Ellis’ diagnosis my wife and I have dedicated ourselves to raising awareness and funds for the CF Trust and this project is a way for me to apply my passion for photography with my determination to raise awareness for a cruel, complex and often mis-understood condition.
My vision for the project
CF is a complex, cruel and often mis-understood condition that requires lifelong care whilst not always having visible symptoms. As such it’s often difficult for people to fully understand the severity of the condition.
My vision for the book was to showcase a wide range of people with CF of different ages, backgrounds and circumstances and to give an insight into their individual experience of living with the condition. Whilst the median predicted survival rate is 47, in reality this number has little meaning to a person living with CF but it’s still a widely discussed statistic. I was curious as to whether attitudes to the condition and life in general changed as people approached, and, hopefully exceeded that number.
Life with CF requires a daily routine of medicine, treatments and physiotherapy along with a progressive loss of lung function. This can often lead to a need for transplants, sometimes at quite a young age. What goes along with that is a complex combination of lifelong challenges that often lead to incredibly strong and resilient personalities who face the realities of mortality on a daily basis.
With this book I’ve tried to capture these personalities and my hope is that as a collected body of work, it gives an insight into the reality of living with this condition.
When I started the project I believed the book was the project and I sat down to work out what processes I needed to go through to produce it. However, it became clear quite early on that the book isn’t the project. The project is the time I’ve spent travelling around the country and getting to know these individuals and the challenges they face on a daily basis. From a personal point of view, the time I’ve spent with every person in this book has been an incredibly rewarding process. The book is a documentation of that process. I believe it’s a beautiful, powerful piece of work that I’m incredibly proud of and I can’t wait to share it with you.