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Deborah Leigh: Devastated mom calls for awareness on rare condition after daughter's death from inexplicable seizures

Helen Leigh displayed all typical symptoms of epileptic seizures but the neurologist insisted she did not have epilepsy
PUBLISHED FEB 26, 2023
Deborah Leigh believes her daughter Helen's death was avoidable (Deborah Leigh/FaceBook)
Deborah Leigh believes her daughter Helen's death was avoidable (Deborah Leigh/FaceBook)

YORKSHIRE, UNITED KINGDOM: A mother from Yorkshire is making a plea for awareness about a rare illness after her daughter's initial diagnosis was altered. Helen Leigh was 25 years old when she died suddenly in May 2018 due to an epileptic episode. Her epilepsy diagnosis had been changed to Non-Epileptic Attack Disorder two years prior (NEAD).

Her mother, Deborah Leigh, is now fighting to raise awareness about the illness so that no one would ever have to endure the same situation again. Deborah said, "She [Helen] was so very independent and the day she died she'd just got the car she'd always wanted and found out she'd been offered a job as a phlebotomist for a private practice."

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"After her death, the neurologist wrote to us saying 'In retrospect, Helen probably had both epileptic and NEAD seizures,'" she added. "Well, you can imagine how that went down. I was so angry – and still am. I think Helen's death was avoidable."

'Helen wasn't happy about the diagnosis'

After having her first seizure in March, Helen, a resident of Rotherham, was initially given an epilepsy diagnosis in November 2014. She was prescribed anti-epilepsy medicine and experienced no seizures for eight months. Describing Helen's reaction to the diagnosis, Deborah said, "Helen wasn't happy about the diagnosis and medication, but what 21-year-old would be? The medication seemed to work and she went eight months without a seizure. Then her medication was changed and she had every side effect going. She was prescribed her old medication but it was titrated, starting at a lower dosage to see how it affected the seizures," as reported by YorkshireLive.

Helen experienced three seizures on Deborah's birthday in September 2015, one of which was captured on camera by her mother. Deborah presented the clip before the Royal Hallamshire Hospital's neurology department. While unaware of the disease, she claims that doctors reassured her Helen could not die from it. According to the Sheffield Teaching Hospitals NHS Foundation, one in four patients with epilepsy is also discovered to have NEAD, which can be managed with psychotherapy.

Helen's fatal attack 

Leigh claimed that Helen was consequently removed from the medication even though she still experienced one or two monthly seizures, many of which went undetected. Helen suffered a deadly attack in May 2018 while at home alone as she was FaceTiming her boyfriend, Nico. When Helen vanished from the screen, he was worried and called her mom.

Helen displayed all typical symptoms of epileptic seizures, including loss of consciousness, tongue-biting, no recollection of the seizures, and seizures while she was asleep, according to Deborah. The neurologist was informed that Helen's attacks were becoming more frequent and severe over time despite his repeated claims that she did not have epilepsy. When Deborah arrived at her daughter's place, Helen was on the floor, and she knew straight away she was dead. They tried CPR before the paramedics arrived, but to no avail, as reported by Yorkshirelive.

The GP practice manager, Leigh, and Sheffield Teaching Hospitals NHS Foundation Trust reached a settlement in September last year regarding a clinical negligence claim. The trust did not acknowledge responsibility, and Deborah expressed regret over not seeking a second opinion. Before Helen died, they were never informed that epilepsy and NEAD could coexist, as reported by Surreycomet.

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