Life After Encephalitis – Heartfelt and inspirational stories from survivors
“I always thought I was a one-off; unique. Back then I had no one to share my experience with…If this book had been available then, I would have realised others had gone, and were going through, similar things to me.”
– Simon Hattenstone, Journalist and features writer, The Guardian
Written by Dr Ava Easton, the CEO of The Encephalitis Society, Life After Encephalitis provides a unique insight into the experiences of those affected by encephalitis, sharing the rich, perceptive, and often powerful, narratives of survivors and family members.
"Dr Ava Easton has done something remarkable with this book” states Susannah Cahalan, author of Brain On Fire: My Month of Madness, “she has given life and support to patients and families living through this silent disease.
“From the first-person cases to the in-depth research and passionate dedication to her work as the head of the Encephalitis Society, Ava Easton has given us a gift with this tremendously important book".
Encephalitis, which causes inflammation of the brain, is a devastating condition whose impact upon people should not be underestimated, with up to 6,000 cases in the UK and potentially hundreds of thousands worldwide each year. It robs people of abilities most of people take for granted – leaving people without their loved ones, and even in those families where the person affected survives the person they once knew can be dramatically changed.
Ava interviewed many people affected by encephalitis for her book, which features several nightmarish accounts of changed personalities, increased violence, and even attempted suicide, alongside uplifting tales of hope, love and of lives renewed.
As Ava says, “I wanted to give a voice to survivors of encephalitis and provide an insight into the experiences of those affected – be they survivors, family members or those left bereaved. Their stories are heartfelt, at times distressing to witness, but also full of hope and inspiration.”
A condition that has gained global recognition due to its portrayal in the popular television series Hannibal, encephalitis can affect anybody at any time, including the sister of Olympic swimming gold medallist, Rebecca Adlington, OBE:
“Life After Encephalitis has given a voice to the millions of people worldwide affected by this horrible condition. As the sister of someone who fought her own battle with encephalitis, I believe it was important that my mum contributed to Ava’s book so that others can take some comfort in knowing they are not, and never will be alone.”
Engaging and easy to read, Life After Encephalitis provides a unique insight into an often misunderstood condition, along with providing a better understanding of the experiences of those whose lives it touches. The book will be an asset to those affected by the condition and professionals alike.
– ENDS –
If you would like any further information, or to discuss case studies or arrange an interview, please get in touch.
Survivors/families featured in the book who are willing to do press interviews:
Roy Axon
At the age of 17, Roy had it all: he was physically fit, popular and intelligent. But his life soon went on a downward spiral when encephalitis affected his intelligence levels, concentration, memory, attention span – and temper. New personality traits emerged – he was no longer afraid of spiders and no longer liked chocolate – and he also developed an obsessive compulsive disorder, began drinking extreme amounts of alcohol and had inexplicable bouts of anger and violence. Now 36 and a successful paralegal, he currently lives in Leeds with his partner, Lauren. He was born in Merseyside and grew up in Nelson and then Runcorn. He plans to progress as a civil servant, maybe have children and hopefully see Liverpool win the league again soon.
Kay Adlington
Kay (the mother of Olympic gold medal swimmer Rebecca Adlington, OBE) remembers how her family was almost ripped apart by encephalitis when her daughter, Laura, was affected by encephalitis at the age of 18. Kay now enjoys a rich and happy family life, which is ever expanding, creating new and great moments for her family to share. Kay has a love of travelling and considers herself very fortunate to have seen many different places around the world.
Ross Buggins
When Ross was affected by encephalitis in 2014, it began a five month nightmare journey for Ross, during which he was sectioned, fell into a coma and even attempted suicide. Now a 30-year-old IT consultant, Ross lives in Norwich with his incredibly supportive partner Emma. He is now moving on with the next chapter in his life – but with the knowledge of how fragile life is, and how not a single day should be taken for granted.
Rachel and Thomas Tarlton
Rachel and her son Thomas live in an old house in Shropshire with their two dogs. Thomas was two-years-old when his mum, Rachel, was affected by encephalitis and although he doesn’t remember much about her illness, he does know a bit about how to cope if someone you know has had the disease, or how it feels to have someone close to you suffering.
Sophie Baughan (written media only)
Sophie is 30 years old and grew up in Walthamstow, East London. She recently moved into her first home, a cottage in Old Harlow, with her boyfriend of ten years, Luke. She currently works for the NHS at their main headquarters in London as a Commissioning Officer for dental practices and opticians. She is a survivor of encephalitis that first struck in 2013.
About the Author:
Ava Easton is a health scientist and researcher specialising in encephalitis, acquired brain injury, and neuro-narratives. She has worked at The Encephalitis Society since 2000, and became Chief Executive in 2011. Ava is also an Honorary Fellow at the University of Liverpool and lectures around the world on encephalitis and its consequences.
About The Encephalitis Society:
The Encephalitis Society was founded in 1994, is a registered charity and the only resource of its kind in the world providing direct support and information to people affected by Encephalitis, and to their family and friends. In 2015/16 we provided support and information to around 250,000 people and 169,400 health professionals. Our website received 190,000 visitors and nearly 800,000 page views from all over the world. The Encephalitis Society receives no Government funding and relies on income raised from individuals, businesses and grant-making organisations.
NOTES FOR EDITORS
For more information, or to request a review copy, please contact:
Helen Clements, Senior Marketing Manager, Routledge
Tel: +44 (0) 207 017 76044 | Email: Helen.Clements@tandf.co.uk
When referencing the book, please include: Life After Encephalitis by Ava Easton, published by Routledge (Taylor & Francis Group).
*Learn more about Life After Encephalitis
at: https://www.routledge.com/products/ 9781138847217
Follow us on Twitter @tandfnewsroom and @routledgepsych
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