A Yorkshire mother has raised awareness of a little-known condition after her daughter’s diagnosis was changed.
Helen Leigh was 25 years old when she died in May 2018 after an epileptic seizure. This was just two years after her epilepsy diagnosis was changed to a nonepileptic seizure disorder (NEAD) diagnosis.
Now her mother, Deborah Leigh, is trying to raise awareness about the condition so that no one has to go through the same tragic situation again.
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Ms Leigh said: “She (Helen) was very independent and on the day she died she had just gotten the car she had always wanted and found out she had been offered a job as a phlebotomist for a private practice.
“After her death, the neurologist wrote to us saying, ‘In retrospect, Helen probably had epileptic seizures and NEAD.’
“Well, you can imagine what that was like. I was so angry, and I still am. I think Helen’s death was preventable.”
Helen, from Rotherham, was first diagnosed with epilepsy in November 2014 after suffering her first seizure in March. She was then treated with antiepileptic drugs and was seizure-free for eight months.
Ms Leigh said: “Helen was not happy with the diagnosis and medication, but what 21-year-old girl would she be? The medication seemed to work and she went eight months without seizures. Then the medication was changed and she had all the sides.” running effect.
“She was prescribed her previous medication, but it was titrated, starting at a lower dose to see how it affected seizures.”
In September 2015, on Ms Leigh’s birthday, Helen suffered three seizures, one of which was filmed by her mother. She then showed the film to the neurology team at Royal Hallamshire Hospital.
The video led to a reevaluation of Helen’s diagnosis from epilepsy to NEAD. According to Sheffield Teaching Hospitals NHS Foundation Trust, NEAD seizures are “a type of seizure” that can “resemble epileptic seizures or blackouts, but is not caused by abnormal electrical shock or blood pressure.”
The trust’s website said: “Non-epileptic seizures occur when the brain is unable to handle particular thoughts, memories, emotions or sensations. They can also sometimes be related to stress or a previous traumatic experience, i.e. something outside of your control It feels too hard.” bear.”
Ms Leigh said she had never heard of the condition, but says she was reassured by doctors that Helen could not die from it. The trust says that one in four people diagnosed with epilepsy have NEAD, which can be treated with psychotherapy.
As a result, Ms Leigh said Helen was taken off her medication despite still having seizures once or twice a month, many of which went unreported. In May 2018, Helen had a fatal seizure while she was home alone but on FaceTime with her boyfriend, Nico. She called Mrs. Leigh after becoming concerned when Helen disappeared from the screen.
Ms Leigh said: “She had all the typical signs of epileptic seizures, such as loss of consciousness, biting her tongue, not remembering her seizures, and seizures in her sleep. The frequency and severity of her seizures increased over time, and this was she informed the neurologist who repeated that Helen did not have epilepsy.
“She didn’t want to come home because she liked her own space, but she moved closer to us, and her best friend lived four doors down so she could check on me. When I got the call from Nico, I thought, ‘here we go. again’ But when I got to her street and she was parking the car, I could hear her best friend yelling, telling me to get in quick.
“Helen was on the ground and I knew right away that she was dead. We tried CPR before paramedics arrived but got no response.”
Ms Leigh, a GP practice manager, settled a clinical malpractice claim with the Sheffield Teaching Hospitals NHS Foundation Trust in September last year, in which the trust did not accept liability and said she regrets not having obtained a second opinion. Ms Leigh said: “Not once before Helen died were we told you can have both epilepsy and NEAD.
“Had we known this, we would have been able to have different conversations with those who treated her, which could have meant more investigation and testing, and resulted in her receiving the correct treatment.”
Dr Jennifer Hill, Sheffield Teaching Hospitals NHS Foundation Trust Medical Director, said: “Helen had a number of investigations during her care and treatment decisions were based on this and other information provided to the clinical team.
“The changes in her care were only made after discussion with Helen and careful consideration by seizure disorder specialists. Helen’s family is understandably devastated by her loss, and we have offered to have a meeting at any time they deem appropriate to answer any other questions they may have.”