18th February 2016
Southampton residents are working together with The Encephalitis Society and Hampshire law firm Moore Blatch to raise awareness about a health condition which leads to inflammation of the brain, ahead of World Encephalitis Day on February 22.
Around 500,000 people are affected by encephalitis globally and at least 6,000 in the UK each year – regardless of their age, gender, ethnic origin or culture.
Without the proper treatment, up to a third will lose their life, while survivors can be left with a legacy of challenges brought upon by the subsequent acquired brain injury.
Survivors of encephalitis can face an uncertain future as the condition can rob them of their memories and leave them with an acquired brain injury - meaning a return to work or education can be difficult.
Abilities such as concentration, attention, thinking, memory, judgement and inhibition can also be affected; while there can be additional challenges such as epilepsy or fatigue.
Two Southampton residents that have both been affected by the condition are determined to raise awareness about encephalitis by adding their support to World Encephalitis Day on February 22.
Alice Brown, whose son Dylan was diagnosed with encephalitis at the age of two and endured a five month spell in hospital is sharing Dylan’s story to raise awareness of the condition.
“Dylan has been left with an acquired brain injury, epilepsy, severe learning difficulties, global developmental delay, a hyperactivity disorder and short term memory loss,” says Alice.
“Luckily he has regained his personality and is able to walk again.
“However the Encephalitis has left much of his brain scarred and he cannot talk nor do anything for himself.
“He cannot regulate any of his emotions and understands very little.
“He needs constant care and supervision. It is not known whether Dylan will be able to regain any of this and if he does to what level.”
Dylan is now five years old and functioning at the level of a 18-24 month old.
He attends a specialist school and has weekly therapies to help maximise his potential.
As well as Alice, Alan Souter, another Southampton resident affected by the condition, who was diagnosed in 2011, is keen for more people to be aware of the condition.
Alan believes he suffered symptoms associated with the condition and felt extreme fatigue for some time and despite repeated blood tests his illness was not diagnosed until he was admitted into hospital. He says he had very little understanding of the condition when first diagnosed. “I had no idea how to deal with my illness and wasn’t even aware I had an acquired brain injury,” explains Alan.
Since being diagnosed, Alan has slowly met other survivors, which has helped in his recovery, but he has been shocked by how little is known about encephalitis in the wider community. He is determined to do more to raise awareness of encephalitis and so is lending his support to World Encephalitis Day.
This year’s World Encephalitis Day event is asking people to “wear something red” on February 22 as part of the #RED4WED campaign.
Employees from Hampshire law firm, Moore Blatch will be supporting the day by dressing in red across the firm’s offices and raising funds in support of those affected.
The firm has dealt with a number of high profile cases where a failure to diagnose encephalitis has led to a poor prognosis for patients. Moore Blatch partner, Tim Spring comments: “Awareness campaigns such as this can also help to serve as a reminder to the medical community, ensuring that staff are kept updated on signs and symptoms associated with encephalitis. The sooner someone presenting with encephalitis is diagnosed and receives appropriate treatment, the better the potential outcome for the patient.”
As well as wearing red, members of the public can also vote for the winner in a Short Film, Digital Art and Photography Competition by visiting www.worldencephalitisday.org
Dr Ava Easton, Chief Executive of The Encephalitis Society, said: “We launched World Encephalitis Day so people affected by this devastating condition can come together to raise awareness about encephalitis.
“We still have a long way to go to make the public and some health professionals aware of a condition which affects more people than Motor Neurone Disease and bacterial Meningitis and yet remains less well known.
“But by having survivors and their families come forward to show the human side of this ‘hidden disability’ can only be a good thing for informing the public about this condition.
“The sad fact is that not many people have heard of encephalitis unless it has happened to them, a family member or friend. We want to change that.”