Helen Leigh died at the age of 25 after suffering a seizure
A woman died of a seizure after being told she did not have the condition, her mother said.
Helen Leigh, 25, from Rotherham, South Yorkshire, was diagnosed with nonepileptic seizure disorder (NEAD) before her death in May 2018.
His mother, Deborah Leigh, seeks to raise awareness about the condition.
Sheffield Teaching Hospitals NHS Foundation Trust said seizure specialists carefully considered Helen’s treatment.
In September of last year, Ms Leigh settled a clinical malpractice lawsuit with the trust, which admitted no liability.
Helen was diagnosed with epilepsy and prescribed medication in November 2014 after a seizure.
But in September 2015, neurologists at Royal Hallamshire Hospital changed his diagnosis to NEAD, which causes seizures similar to epilepsy but without a physical cause.
Deborah Leigh said she was ‘so angry’ about the death of her daughter Helen
Helen was taken off her medication and assured her seizures could not be fatal, her mother said.
Ms Leigh, a GP practice manager, said: “The frequency and severity of her seizures were increasing over time, and this was reported to the neurologist, who repeated that Helen did not have epilepsy.”
In May 2018, Helen suffered a fatal seizure at her home.
After her death, a neurologist told her family that “in hindsight, Helen probably had seizures and NEAD,” Ms Leigh said.
She added: “I was so angry, and I still am. I think Helen’s death was preventable.”
‘Devastated’
Ms Leigh said: “Not once before Helen died were we told you can have both epilepsy and NEAD.
“If we had known this, we would have been able to have different conversations with those who were treating her.”
Dr Jennifer Hill, the NHS trust’s medical director, said a number of inquiries had been carried out into Helen’s condition and changes to her treatment were only made after speaking with her and after “careful consideration by of specialists in seizure disorders.