47 / A Life With Cystic Fibrosis
by Simon Wiffen
47 / A Life With Cystic Fibrosis is a book of beautiful, intimate portraits exploring the reality of living with cystic fibrosis. Each subject offers an insight into their attitudes to life and their condition up to and beyond the median predicted survival rate of 47.
- A4 Paperback
- 108 pages
- PUR bound
- High quality 200gsm internal pages printed with 4 colour digital process
- Heavyweight 300gsm matt laminate outer cover printed with 4 colour digital process
- Publisher: Independent Publishing Network
- Publication date: 2018
- 47 / A Life With Cystic Fibrosis
- ISBN: 978-1-78926-768-6
Copyright © 2018 by Simon Wiffen
All rights reserved. No part of this publication may be reproduced or used in any form without the prior permission of the author.
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Photographer Simon Wiffen presents 47 / A Life With Cystic Fibrosis – a series of stunning portraits exploring the realities of living with cystic fibrosis and attitudes to life and the condition up to and beyond the median predicted survival rate of 47.
“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.
Cystic fibrosis (CF) affects more than 10,400 people in the UK, but the daily challenges faced by those with the condition remain relatively unknown. 47 / A Life With Cystic Fibrosis is a new photography book which aims to change that. It’s a genetic life-limiting condition that affects the lungs, digestive system and other organs and can cause chronic infections and reduced lung function. There’s currently no cure. While CF is unforgiving, relentless and unbelievably cruel, the subjects of these portraits show strength, resilience, defiance and an appreciation of life that many of us can only ever hope to find.
For every book sold, £5 is 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.
I’d love to hear your thoughts on the book. If you’ve purchased a copy I’d really appreciate it if you could leave a review below. It’s amazing to see copies of the book out in the wild so feel free to tag me in your pictures (@SimonWiffen on Twitter and Instagram) and use the hashtag #47ALifeWithCysticFibrosis.
Simon Wiffen is a Leeds-based photographer, husband, record collector and a dad of three. His youngest, Ellis, is 2 and was diagnosed with cystic fibrosis at 3 weeks old. Visit the press kit page for contact details, review copies, photos and an author bio.
As someone who has CF and had a brother who suffered with CF, and then passed away at 30 from waiting for a lung transplant, I found this book illuminating and identifiable; each struggle with life is unique, and struggling with life AND CF is it’s own war altogether, filled with these battles we must overcome. The people in this book are those people. Simon Wiffen is an artist, encapsulating the images of people that have the scars of war etched into their eyes and skin, an invisible illness that leaves visible scars and effects. My brother Tyler Jones has been so kindly added by Simon in the “Memories” section, (30, West Midlands, near bottom of page, me-left, Jay-right, Ty-middle). Thank you Simon for that, and thank you for all the amazing work you’ve done and thank you for sticking with your family through your fight looking after a child with CF. As we were growing up so many families were literally breaking apart because their children/child was diagnosed with Cystic Fibrosis. So anyone who keeps a family together through that development is a hero. To Simon, keep on illuminating as we tread through the darkness.
This book is amazing! Its a good way to show others how CF affects each of the people with it, and how different it can be. Loved reading each of the stories within the book. Well done for making it happen and coming up with this project and letting me to be part of it.
The simple reality of life with CF
I have CF and one of the most frustrating things about living with the condition is that it is really difficult to explain how it affects you. Subsequently, it feels like there is little awareness and understanding of how difficult living with CF can be. In the 40 years I have been alive, there are are only a handful of awareness raising campaigns that I feel have accurately painted a picture of life with this devastating condition. Simon’s book really comes out top of that list. The book is immensely powerful, in that it not only denotes the efforts, fear, optimism and challenges of living with CF, but also the normality and the mundane. The accounts from the children will have you laughing out loud. The adults’ stories bring home the unique strength and determination that pwcf have. Simon has achieved something incredibly special within this book – the simple reality of CF. There is no dressing up or down of the issues. CF is just told as it is. It’s an absolute masterpiece!
Outstanding piece of work
I think like a lot of people, CF is a condition i knew absolutely nothing about, and this is an amazing medium for bringing awareness to it. Not only is it a stunning book of powerful, beautiful photography – but it offers you a glimpse into the varied lives of people living with CF and how it affects them. Congratulations Simon, its an incredible piece of work.
Fabulous book, couldn’t wait to get my hands on it. Fantastic cover photo, all excellent and very professional. It’s lovely to see some of the people in the book that I have grown to love and admire, and some that are no longer with us. The very challenging times in the life of every Cf person is taken in their stride, very courageous and extremely brave in all they do. I am in awe of all of them. 💖
Well, after reading some of these reviews I know anything I say is a going to pale in comparison. I don’t often read reviews myself but hats off! To start with, full disclosure Simon is my brother in law, and Ellis Wiffen is my incredible nephew. This might make you take my review with a pinch of salt but here it is anyway 🙂 Back when I was told my then weeks old nephew had been diagnosed with CF, I didn’t know what to think. I, like many others had heard the word but knew nothing about it…I read up on the facts. I discussed with my parents and my sister. This was nearly two and a half years ago, and it wasn’t till I just finished reading this book that I felt I understood or at least, appreciated what people go through. However severe your CF, you are fighting, every single day. With strength and perseverance most people will never know. I tip my hat to everyone out there with CF, and to Simon for bringing some of your stories to the fore. The book, for all it’s beautiful uniformity (layouts and perfectly taken black and white throughout) is also beautifully diverse from page to page. It’s really hard to describe the feelings of reading the book. Knowing that each of these people in your hands is a real person…and trying to understand their struggles. It’s truly emotional but the overwhelming feeling upon putting the book down is hope. Hope… Simon has beautiful captured all these people and for all their differences in age and posture there is a fire in every eye. All these people are up for the fight and the work the trust does is helping them along the way. Overall… Amazing quality product, amazing photography, amazing people, amazingly emotional and well worth it to anyone thinking of picking up a copy.
Like others I had a quick look when this lovely book arrived, thinking I would go back to it later, however I couldn’t put it down and read every word! It made me smile, especially the children as they are so innocent and special, but also cry as the poignancy of the book touched my heart. Simon, your portraits are amazing in capturing a personality and telling a story and the work that has gone into this is awesome. What a fantastic piece of work which will hopefully raise awareness and help in the move towards a cure. Thank you.
Brilliant. Really love the book! Better than I thought it was going to be, it’s amazing. Loved reading the little stories. I’ve shown it to some family members and they love it and said it was very informing also!
A honest true reflection of what it is like to live with CF from the people that truly know. A beautiful, thoughtful piece of work, giving insight into a disease that is not widely understood. My kids love it! It has helped my daughter realise that she is not alone. Thank you Simon did you dedication to this project.
A Book Review.
You know you have high hopes for a book when you plan when and where you will first read it. That’s what I’ve been telling myself. Or have I been procrastinating? Maybe I am apprehensive. Scared even. Maybe I’m not ready for how it will make me feel. how I will react, or how I should I react. Tentatively, I sit down and put on my reading glasses. I have only been wearing glasses for 6 months. As I put them on I realise they help me overcome pretty much my only ailment. Old eyes. Even the interface between me and the book feels poignant. I look down at the front cover. In the centre is a portrait of a young man with piercing eyes. Handsome and confident. A picture of health. I glance up to to remind myself of the full title, “47 / A LIFE WITH CYSTIC FIBROSIS.”. I digest the subtitle more carefully, “Intimate portraits exploring the reality of living with Cystic Fibrosis.”. I like them both. The title is disarming. 47 is the average life expectancy of a person with Cystic Fibrosis. I’m 42. I look back at the handsome young man on the cover. I realise I know nothing of his life. I look down to the name of the author, “SIMON WIFFEN”. Simon is a friend, and his son Ellis has Cystic Fibrosis. I put the book down. I cry. I’m not in the right head space. I realise I’m in awe of Simon. Two days pass. I pick up the book again. On the inside cover is a touching hand written message from Simon. This is a self published book funded by a Kickstarter campaign, and as I pledged to support the book, I technically paid for the hand written note. Never the less, Simon’s words are kind, and bring me to tears again. Angry with myself I roughly wipe my eyes. THIS IS NOT ABOUT ME. I turn to the inside cover, there is an ISBN number! This makes me smile. He did it. He actually made a book. The next page contains a short dedication. I decide to move on and come back to this after reading the book. Partly because I feel that was the order it was written in. and partly because I feel it will have more context that way around. The next page stops me in my tracks. The contents page. I’m not sure I have ever read a contents page before, never mind been struck by it. It’s a list of names. A list of names of 47 people with Cystic Fibrosis. 47 people who had agreed to meet with Simon and share something of their lives with him. 47 people who trusted him with their pictures and their stories. There is a chapter for each person, two pages long, finishing at page 100. Page 102 is carefully positioned separately on the page. It simply reads, “In Memory………”. I study the contents page for some time. I linger on the list of names, reading each careful. This is going to be both incredibly moving and done with great respect. Then I notice the elegant typography and the page numbers themselves. They are all even. No odd numbers. This resonates Simon’s meticulous attention to detail and eye for design. This is going to be beautiful. In fact, this book is all of the above, and none of the above. It does exactly what it says on the cover. This book communicates in intimate detail the realities of living with Cyctic Fibrosis. Realities which I knew little or nothing about. Simon is a remarkable photographer, and the portraits are elevated, powerful and extraordinarily human. Every story is unnervingly personal. Somehow they draw you in, each taking you one step closer to understanding a life with CF. And as they do, they take you one step closer to understanding the very essence of the human spirit. As I finish the book, it it difficult not to wonder about Simon and his family, and the emotional impact the creative process of making this book must have had on them. I turn back to the dedication page. I was right to leave it until last. As I read it I realise I am smiling though my tears as I am filled with overwhelming sense of hope, love and solidarity with Simon, his family and the amazing people in this book. This is an exceptional piece of work. While we breathe we hope. 11/10