Cold sore virus left mum with brain damage

At 74, Helen Edwards never anticipated that a virus she had likely carried since childhood could lead to severe brain damage. Her journey began with what she believed was a common flu, but it soon escalated into a 12-week hospital stay. Medical professionals diagnosed her with encephalitis, a rare yet life-threatening condition marked by brain swelling, which proves fatal in 20% of cases.

Global impact of the virus

The herpes simplex virus type 1 (HSV-1), commonly known as the cold sore virus, affects an estimated 3.8 billion individuals under the age of 50 globally—nearly two-thirds of the world’s population. Despite its prevalence, the condition remains under-recognized, with 77% of people unaware of its nature. Encephalitis International highlights that the disease can strike at any age, with around 6,000 cases reported annually in the UK, and potentially hundreds of thousands worldwide.

From active life to memory struggles

“She used to be so lively and fit,” said Jane Richards, Helen’s daughter. “She’d exercise daily, manage the family transport business, and run her own animal feed venture.” Jane recounted how Helen’s life transformed after contracting the virus. “Now she struggles to form new memories and doesn’t recognize her home, even forgetting how to navigate familiar rooms.”

Helen’s condition worsened rapidly after September 5, last year, when she began experiencing fever, fatigue, and nausea. Initially treated for a urinary infection, her symptoms evolved into confusion and strange behavior. By September 12, she was admitted to Ysbyty Bronglais in Aberystwyth, where a CT scan confirmed brain inflammation, leading to a diagnosis of viral encephalitis.

Challenges of diagnosis and recovery

Encephalitis can be difficult to identify from its initial symptoms, often requiring brain scans or other diagnostic tools. Helen’s case, caused by HSV-1, underscores how the virus can remain dormant in most people, with no symptoms, yet still trigger severe complications. Jane emphasized the urgency of early treatment, noting that antiviral therapy within 48 hours can reduce the risk of serious outcomes. “Time is of the essence,” she said, urging others to watch for signs.

Following her diagnosis, Helen received intensive physiotherapy and occupational therapy, but her recovery has been slow, especially since returning home. The family now shares caregiving duties, including meal prep and shopping. “We used to take care of the grandchildren, but now it’s her taking care of us,” Jane added. With autoimmune encephalitis developing, Helen is currently at Morriston Hospital in Swansea, where her condition continues to pose challenges. The family remains uncertain about the long-term effects of her injury, stressing the importance of prompt recognition and treatment.