When Helen Edwards first started feeling unwell, it looked like a bad dose of flu.
The 74-year-old from near Aberystwyth developed a fever, aches and exhaustion, and was told she may have a urine infection.
But within days, her family watched her change in front of their eyes as confusion and strange behaviour set in.
Helen’s daughter, Jane Richards, said her mum had always been “really lively and fit”, regularly sea swimming, walking the dog and helping run the family transport and animal feed businesses. On Tuesday 2 September last year, that suddenly changed.
“She had flu‑like symptoms fever, feeling really unwell and achy, Mum isn’t someone who usually feels poorly, so it was unusual. After a couple of days she felt rotten, so she went to the GP, who thought it might be a urine infection and gave antibiotics.”
The next day Helen’s body began to shake, and she went back to an out‑of‑hours GP on the Saturday. Again, she was told to carry on with antibiotics.
By the Sunday afternoon, her behaviour had become alarming. “She started doing really strange things,” Jane said. “She went into the wrong room looking for the office, then tapped a notepad as if it was a phone. Her speech was very delayed – you’d ask a question and it took ages for her to answer.”
Concerned, the family took her to A&E. After a long wait, they were told she might be delirious because of an infection and were sent home.
When Helen deteriorated further, they returned to the same hospital. This time she was admitted and put on intravenous antibiotics.
It was only after a CT scan several days later that doctors spotted inflammation on her brain and diagnosed encephalitis, a serious condition where the brain becomes swollen.
Later tests showed the likely trigger was herpes simplex virus type 1 (HSV‑1), the common “cold sore virus” carried by billions of people worldwide.
Helen spent 12 weeks in hospital. Although antiviral treatment helped control the infection, she was left with an acquired brain injury. “When she came home, she didn’t recognise the house,” Jane said.
“She couldn’t navigate familiar spaces or remember routes between rooms. We had to explain every tiny step of anything we did.”
Carers visited three times a day, but the family still had to take on much of Helen’s care, from cooking and shopping to helping her move around the house. “Life changed quite dramatically,” Jane said.
“She used to take my son to school three mornings a week, now we take it in turns to look after her.”
More recently, Helen has developed autoimmune encephalitis, where the immune system attacks the brain and is being treated at Morriston Hospital in Swansea.
“In Mum’s case, part of her brain just isn’t working now,” Jane said. “We don’t know what the long‑term impact will be.”
Encephalitis International, the only global charity focused on the condition, estimates encephalitis affects about 6,000 people a year in the UK and 1.5 million worldwide.
Up to 40 per cent of patients may die, and many survivors live with complex cognitive, physical and emotional difficulties. In 2025, the World Health Organization described encephalitis as a “growing global threat” and an “urgent public health priority”.
Despite this, awareness remains low. Research for the charity suggests almost eight in ten people globally do not know what encephalitis is.
Jane believes that lack of awareness contributed to delays in her mother being diagnosed.
“Time is of the essence,” she said. “If antivirals are given within 48 hours it can reduce the risk of severe symptoms, but if no one is thinking about encephalitis you lose that window.”
To help families and health professionals spot possible cases sooner, Encephalitis International has launched the FLAMES acronym. It stands for Flu‑like symptoms, Loss of consciousness, Acute headache, Memory problems, Emotional or behavioural changes, and Seizures, a cluster of red flags that should prompt urgent medical assessment.
More information and support for anyone affected by encephalitis is available from Encephalitis International at encephalitis.info.
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