Description
47 / A Life With Cystic FibrosisĀ 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.
You can read more about this project on the project page.
Additional information
- 8×10″ (20.32×25.4cm) Paperback
- 104 pages
- 100gsm internal pages
- 220gsm matte finish outer cover
- First published in 2018 by Independent Publishing Network
- This version published in 2020. Independently Published
- 47 / A Life With Cystic Fibrosis
- ISBN: 9798656667968
Copyright Ā©Ā 2018Ā byĀ 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.
Philippa Crick –
Had to buy it as soon as I saw this beautiful book. I was shown this book by one of my Year 11 students at school. He did not want to hand it over as it was so precious but he wanted to show it to me and as soon as he did, I understood why. We had just been talking about CF in class. After the class left, and I had persuaded my student to leave the book with me for a few hours, I opened it and started to read. Wow – I was not expecting the rush of emotion. This is when I went straight onto the internet and ordered my own copy….
Geraldine Crudge –
This book, with it’s beautiful portraits and compassionately documented stories made me cry and smile all at the same time. I love how you have given a voice to people with CF to set out a snippet of their own experience. Thank you.
Angie Claxton –
Beautiful. Stunning photographs of many cf warriors and snapshots of their lives with one thing in common. Beautiful lives blighted by such a cruel disease. A great insight into living with cystic fibrosis and spreading the word.
Petra Coase (Poppy Petal) –
Poiniant, brilliant and emotive. My sister Cindy Mccloskey and I both received our copies of this wonderful book which is full of beautiful classic photography and encapsulates clear reflection of individual, personal journey’s from those living with the debilitating and life limiting disease that is Cystic Fibrosis, and photos of those who have sadly passed. Very precious.
Thank you Simon Wiffen ššš
Ruth Lovett –
Fabulous! Well presented and very respectful. Really enjoyed reading the shared stories. Well done!
Amy Hainsworth-Sayer –
The book is truly beautiful. The photos are spectacular. The words spoken by each person featured are a true representation of living with CF. Completely raw, unedited, thought-provoking and real.
Laura Bonnell –
Art. This book is beautiful. Beautifully shot and beautifully told. #Moving
Danielle Firth –
A beautiful heartfelt book. Photos are amazing and the detail. CF is such a cruel illness but at least with this book, people may understand more.
Mitch Jones –
ILLUMINATING! 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.
Justyna Zaskwara –
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.
Katie Gathercole –
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!
Jon Barnes –
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.
Jayne Cartwright –
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. š
Ben Denison –
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
Annie –
Stunning. 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.
Shelby Woods –
Brilliant. Really love the book!
Better than I thought it was going to be, itās amazing. Loved reading the little stories. Iāve shown it to some family members and they love it and said it was very informing also!
Michelle Bell –
Fabulous! 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.
Cara Chittenden –
Just wow. Thank you for allowing us to be part of your beautiful book. It surpassed all expectations. I canāt stop looking at it.
Jack took it in to school and stood up in assembly to tell them all about it. Not only where the kids asking him for his autograph heās had quiet a few offers from the girls wanting to be his girlfriend! š ( heās a good lad and just sticking with his current one ! )
More importantly this book has already allowed us to open up to questions from people enabling us to educate and spread awareness.
Thank you again
Craig Reid –
Absolutely incredible. This is a wonderful book. It is a brutally honest, funny, sad, collection if beautiful real people. It is a fantastic book, beautiful photos, funny and sad stories and heart breaking rear cover…. LOVE IT
Joanne McLaughlin –
Amazing. It had me captivated from the moment I took it from the package. I really wasnāt expecting it to stir up every emotion in me like it did. So beautifuly put together Simon thank you. Congratulations.
Justyna Zaskwara –
I have no words to describe how amazing this book is! All of your hard work has definitely paid off by being able to spread awareness about CF. This book gives you also a chance to be able to understand how CF works and how different it is from each person. Beautiful pictures and Iām absolutely privileged that I was able to be a part of it!
Helen Jordan –
The best book of 2018! Such a wonderful book, highlighting the daily battles of those who fight against CF. Simon has worked so hard to produce this book & Iām so pleased that itās receiving the recognition it deserves. Letās hope that it spreads the word about this life limiting condition.
Charlotte Grice –
Beautiful book! Well done Simon! This book is truly fantastic and the photography is stunning. I feel privileged I own a copy.
Bob Wiffen –
Brilliant result of a year’s work! This book is a great work by our son, Simon. Although we are biased of course, it cannot fail to move, enthrall, inspire and challenge all at once. The quality of the photography, the editing of the conversations and the uniqueness of the whole project combine to project a whole new understanding of the Cystic Fibrosis challenge that so many people face on a daily basis.
We hope and pray that if there is another volume in a few years, it will start with the number 60!
Kay Wesley –
Unputdownable! Stories of inspirational people, accompanied by beautiful photographs. Highly recommended. Thank you.
Lee Gathercole –
Amazingly powerful and moving depiction of CF. Full disclosure, my wife is in the book. However, this is an outstanding piece of work. The photography is outstanding, but the individual stories are what makes this book so moving.
It is unique in getting the perspectives of people with CF across a multitude of ages and I haven’t come across a better way of explaining just what CF is.
The overriding theme here is, without exception, the positivity that people with CF attack life. Every breathe counts
Laura Walker –
Absolutely Beautiful!! This book has left me speechless! Itās so beautiful, thought provoking, moving……simply stunning. I feel so privileged to be allowed a glimpse into the lives of these beautiful people.
Rachael –
Excellent. What an absolute pleasure its been to be in this book! Looking through all these different storys of people with cf and how every one is different has been a real eye opener. It really shows you how cf effects everyone different. Im so glad there is actually a book out there with people with cf telling there story! Raising awareness! Simon has done an amazing job putting all this togther.
Rochelle Coleman-Taylor –
Amazing!! Thank you so much for all your hard work in producing the fantastic book. It is great to see all the photos and read all the stories.
Lorraine Barnes –
Just amazing! Excellent work – such a unique book of fantastic pictures. Well done Simon – you should be really proud.
Katy –
Fantastic book! Such brilliant photographs, each one in a similar style, but yet capturing each persons identity perfectly.
I sat and read it all last night and it made me smile, laugh and cry. A fantastic idea, and put together perfectly. Will be fab for gifts and Iām definitely going to buy at least 1 more for that purpose. Well done Simon!
Olly Lawrence –
JUST WOW !!! The beautiful pictures which show the way each and every patient with Cf copes with their own struggles and life is amazing.
Dorian Smith –
A book which tells many stories. A perfect balance of art and education. It gave the subjects a voice and it gives the readers an insight into how CF affects people differently, both physically but also psychologically and across the ages… a piece of work to be proud ofā¦
Jackie Buxton –
Recommended on every level. What can I say? I’ll have a quick flick of this magical looking book, I thought, then get back to it later when I have a little more time. That was an hour ago. I have looked at every photo (they are beautiful, truly beautiful) read through every extract and all the other pieces in between. Iāve cried real tears and Iāve smiled, too. This is a work of art ā an insight into a world few of us who have no contact with CF understand ā and itās aesthetically gorgeous, too. I recommend it on every level.
Katie –
A powerful and emotional book. Such a great idea to raise awareness of this horrible genetic condition. To see how differently people are affected by CF in one book is so important, especially as people with CF aren’t allowed to meet in person. Simon is also a great photographer which shows through on these fabulous portraits.
Phil –
Perfectly executed. 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 š
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.
Sarah Kerr –
Beautiful piece of work š I read the book from start to finish on Saturday. Beautiful portraits of amazing people and their views made me both laugh & cry. Itās a powerful piece of work which will hopefully help to raise much needed awareness of this cruel disease and highlight the daily battles that our children have to go through. Well done Simon, you must be very proud.
Victoria Peters –
Wow! Received my copy today and what a fantastic, beautiful book. Such stunning pictures. Absolutely amazing. Thank you.
May –
The humanity of CF. This is a beautiful book, researched and produced immaculately by Simon. The simple (not so simple to acheve) visual and written portrait of each participant is humbling and warm, the smiles and the apparent ‘normality’ belieing the adjustments and difficulties which the rest of us don’t have to face or even dream about. Can’t put this treasure down. SO GOOD!
Jane Watson –
A wonderful book. A wonderful insight into different people living with Cystic Fibrosis. It shows different age groups and varying aspects of their personal life and varying degrees of their illness. The photography is amazing. A lot of hard work and dedication has gone into this Simon. Well done.