Unexpected Impact of Cold Sore Virus on Helen Edwards
Helen Edwards never anticipated that a virus she might have carried since childhood would result in brain damage. Initially believing she had the flu, the 74-year-old woman from Penrhyn-coch near Aberystwyth, Ceredigion, ultimately spent 12 weeks hospitalized.
Doctors diagnosed her with encephalitis, a rare but serious condition characterized by inflammation or swelling of the brain. This condition has a mortality rate of approximately 20%.
The cause was identified as herpes simplex virus type 1 (HSV-1), commonly known as the cold sore virus. HSV-1 is estimated to affect 3.8 billion people under 50 worldwide, representing about 67% of the global population.
The virus has had a profound effect on Helen, who previously enjoyed sea swims and daily dog walks. According to her daughter, Jane Richards, Helen now struggles to form new memories.
"When she returned to her home, she no longer recognised it and could not navigate familiar spaces, even forgetting routes between rooms," said Jane.
Encephalitis affects an estimated three people every minute worldwide. Despite this, awareness remains low, with 77% of people unaware of the condition, according to campaigners.
What is Encephalitis?
Encephalitis can affect individuals of any age, with up to 6,000 cases reported annually in the UK and potentially hundreds of thousands worldwide, as stated by Encephalitis International.
The condition occurs when an infection invades the brain, causing symptoms such as high temperature, fever, confusion, headaches, or seizures.
Diagnosis is often challenging due to symptom overlap with other illnesses and typically requires brain imaging or additional procedures.
Various viruses can cause encephalitis, including HSV-1. The World Health Organization notes that HSV-1 is primarily transmitted through close, direct skin-to-skin contact with an infected individual, such as kissing or sharing items contaminated with saliva like lip balm or cutlery.
HSV-1 is a lifelong infection with no cure. Many people contract it during childhood through close contact with family members. While it can cause recurrent painful blisters or ulcers, it often remains dormant without symptoms. Helen herself never experienced cold sores.
Helen's Health Decline
Jane described her mother as "really lively and fit," noting that Helen exercised daily, helped manage the family transport business, and operated her own animal feed venture.
On 5 September last year, Helen began feeling unwell with fever, aches, fatigue, and nausea. A general practitioner initially suspected a urinary infection. However, within days, Helen became confused and exhibited unusual behavior, according to Jane, who is 40 years old.
Helen was admitted to the Accident & Emergency department at Ysbyty Bronglais in Aberystwyth, where her condition rapidly deteriorated. She experienced severe confusion, loss of coordination, and increasing drowsiness.
Despite antibiotic treatment, there was no improvement. Jane recalled having to "explain every little step of anything to her." A CT scan revealed brain inflammation, and on 12 September, Helen was diagnosed with viral encephalitis.
Helen spent a total of 12 weeks in hospital. Due to the brain damage sustained, her recovery has been slow. She has undergone intensive physiotherapy and occupational therapy but has faced significant challenges, especially after returning home.
"She did not even recognise some of the rooms," Jane said, adding that life had "changed quite dramatically."
Helen's siblings and Jane take turns caring for her, including preparing meals, shopping, and general support.
"That was sort of a big change from her looking after the grandchildren - she used to take my son to school three mornings a week before," Jane explained.
Initially, carers visited three times daily for about half an hour each time, but Helen required more extensive support.
Helen is currently receiving treatment at Morriston Hospital in Swansea after developing autoimmune encephalitis, a complication that can follow viral encephalitis.
"In my mother's case, she now has an acquired brain injury which means that part of her brain is not working," Jane added.
"Now it's a big impact because obviously we're working and we're travelling to Morriston to visit her as much as possible. We don't know what the long-term impact is going to be."
Importance of Early Diagnosis
Encephalitis International, which supports Helen's family, emphasizes that delays in diagnosis can lead to further long-term damage.
Jane stressed that "time is of the essence," noting that antiviral treatment administered within 48 hours can reduce the risk of severe symptoms.
"They [the patient] can't talk and say what's wrong. Doctors don't always know about it because they don't come across it often. As the timeline is important, knowing the symptoms is really important."
Hywel Dda health board declined to comment on Helen's specific case but stated that staff are highly trained to respond promptly to a wide range of situations.
Executive medical director Mark Henwood described encephalitis as a "rare and serious condition which is difficult to diagnose because the symptoms are similar to many other conditions."
He added that the health board is committed to raising awareness of diseases, particularly common ones, and reiterated that staff are well-trained to respond quickly to various medical situations.
