Former Faversham woman left with memory loss speaks of encephalitis battle
06:00, 26 June 2020
updated: 07:16, 26 June 2020
Waking up in hospital to find your memory completely wiped might sound like the plot of an action thriller, or a bad dream.
But for Fran Geall, it was a horrific reality.
She was just 24 when she emerged from an eight-day coma with no memory of who she was, unable to communicate with, or understand, the people surrounding her.
Panicked and scared, with tubes leading from her body to strange machines, she began punching and slapping herself in the head - desperate to wake up from what she thought must surely be a nightmare.
Just a week before, Fran had been at the happiest point of her life.
After years spent studying marine biology, the bright and ambitious graduate had landed her dream job, as business development manager at the Whitstable Oyster Company.
She and her fiancée Stacey had moved in together in Faversham and were planning their summer wedding.
She was happy, healthy and had no idea her life was about to change forever.
But late in March 2018, Fran began suffering from crippling migraines.
The pain in her head grew so bad she visited both her GP and A&E but was sent home, assured there was nothing sinister underlying.
A few days later, Fran’s partner returned home from a dog walk to find her having a severe seizure.
She was rushed by ambulance to the William Harvey Hospital in Ashford but medics couldn’t stop the fitting and placed her in an induced coma.
When she awoke, she had no memory of her former life.
Fran had suffered from autoimmune encephalitis - an inflammation of the brain caused by her immune system attacking it in error, which left her with severe brain damage.
She was transferred to the Kent and Canterbury Hospital, spending a fortnight in intensive care before moving to a neurology ward to recover.
Today, she has little recollection of being there. But a detailed blog she kept at the time, once she had regained the ability to write, provides an insight into her terrifying experience.
“I have been awoken from an eight-day coma,” she wrote in an early entry. “I don’t know my own name and can’t understand what anyone is saying.
“It’s like I’ve been kidnapped, drugged, taken to a new country and have forgotten how to speak, hear and listen.”
Her blog documents her journey, as she got to know her loved ones again.
“The emotions you have for them are still there,” she later wrote. “You may not know your partner’s name or even your mum’s name, but you know you love them.”
She also had to re-learn the life she had before her illness.
“One day I was being showered and discovered scars all over my body,” she wrote in her blog. “I realised then that I used to self-harm for about 10 years.”
Fran re-learned how to walk, talk, read and write. But two years on from her ordeal, her memory hasn’t recovered.
Aside from what she has been told by family and friends, she has no memory of the last five years.
“It’s completely ruined my life,” says Fran, now 26. “I was working, fit and healthy. I’d got the dream job.
“I’d done a degree in marine biology, then a masters in sustainable agriculture. I think it cost about £40,000 in total.
“But my years of studying have all gone now and I had to give up my job. I’ve always loved the ocean but it’s too dangerous now for me to go out to sea.”
"I have to meet a new person five to 10 times before I remember them..."
Since the encephalitis struck, Fran has separated from her fiancée and has moved to Cornwall, to be near her family.
“The last five years is completely gone and prior to that is very patchy,” she says. “There’s not much I remember.
“There are times when family or friends are relaying stories from up to 15 years ago and I sit there and nod and don’t actually know what they’re talking about.”
Fran also suffers from short-term memory loss, caused by epileptic seizures she has every couple of weeks, as a side-effect of the encephalitis.
“It’s very isolating, to go to an event or watch something on telly, then the next week not be able to remember it,” she says.
“It’s worst with things that don’t repeat themselves. I have to meet a new person five to 10 times before I remember them.”
She also has bouts of extreme fatigue and feels ashamed at sometimes being too tired to get up.
“I’m still very disabled but it’s a disability that’s not seen, so it’s not understood,” she says. “I find I have to explain it to people I meet.
“It frightens me thinking about what I can’t do. If I sit down to work or remember something I’ve learnt, it causes a seizure. My brain doesn’t have the capacity.”
Fran now lives with her new partner Yaina, but worries about the long-term impact her memory loss will have on their lives.
“Encephalitis is a thief - robbing families of their loved ones or, if they survive, the person they once knew."
“She’s been brilliant and completely supportive,” says Fran. “But we’ve had to say to each other that if I can’t get better within a certain amount of time, maybe we’ll have to go back to being friends.
“I wouldn’t be able to have kids with the frequency of my seizures and I don’t want to put her life on hold.”
Sadly, neurologists do not believe Fran will ever regain her long-term memory.
But she hopes that by finding the right combination of medication, she can bring her epilepsy under control and improve her short-term memory.
Her blog has now been published online and she is helping to raise awareness of encephalitis, which she had never heard of until her diagnosis.
Experts are calling for emergency funding for research into encephalitis - which is more common than cerebral palsy and multiple sclerosis in the UK.
Each year, there are up to 6,000 cases in the UK alone, and half-a-million more worldwide, according to charity Encephalitis Society.
The inflammation of the brain can be caused either by an infection invading the organ, or by the immune system attacking it in error.
Anyone at any age can get it and symptoms can include headaches, high temperature, seizures, inability to speak or control movement, neck stiffness, altered personality, psychosis, hallucinations and memory loss.
The long-term prognosis for those affected varies considerably, person by person. Some come through the illness with few consequences while others, like Fran, suffer lasting effects for many years.
Encephalitis Society is calling for an urgent increase in funding for research into the illness, which struggles with a lack of awareness and investment.
Chief executive Dr Ava Easton said: “Encephalitis is a thief - robbing families of their loved ones or, if they survive, the person they once knew.
“It steals memories, personalities and abilities we take for granted: concentration, attention, thinking, judgement, inhibition.
“For many of our members there are additional challenges such as epilepsy and levels of fatigue so great that returning to a normal working life can be difficult.
“More investment into encephalitis will help us better diagnose and understand the condition as well as improve the after-care for the hundreds of thousands of people globally who fall ill each year.”
For more information, visit Encephalitis Society's website.
Read Fran’s blog here.
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