Monday 17 June 2019

'It was traumatising' - woman who can't remember anything from six months ago due to her epilepsy

Photo: Young Epilepsy
Photo: Young Epilepsy Newsdesk Newsdesk

A niece of James Bond author Ian Fleming has said revealed she cannot remember anything from six months ago due to her epilepsy.

Hum (Hermione) Fleming (28) was just 13 when she had her first seizure, which she describes as like an out of body experience.

Her long-term memory has gone, and she cannot remember anything from six months ago.

“I was actually undiagnosed for I think a year or two years, and because I have absence seizures, mine specifically manifests itself with me kind of going semi unconscious, semi not. But you can’t explain what’s happening or communicate.”

“And that obviously, when it first happened, when I was with my dad, I think during it I thought my God my heart was going so fast.”

“And I remember thinking, God if I am dying, and this is it, all I wanted to do was to be able to kind of just be like ‘I love you’ or like say (voice breaks) say goodbye or something like that, but because you’re literally paralysed you can’t really express anything.”

“I think after it even then trying to describe what had just happened… did I experience that? And I know that he and my family could see that obviously I was seriously affected by this. And that it was traumatising, terrifying.”

Hum suffers one or two seizures a month. Medication and a “responsible” lifestyle helps to keep them at bay. She is fronting a national campaign in the UK called #InTheMoment to raise awareness about epilepsy.

‘The difficult thing for me is trying to measure what I have forgotten, because how could I possibly know? I’ve forgotten what I’ve forgotten.”

To have epilepsy is to have a tendency to have recurring seizures. Anyone can have a seizure, if the brain is exposed to a strong enough stimulus.

“We know that about 1 in every 20 people will have a single seizure at some time during their lives,” Epilepsy Ireland says.

Some 37,000 people over the age of five have epilepsy in Ireland

Hum, who lives in the UK, says her main side effect is memory lapses, which she describes as “accelerated forgetting”.

“Even in normal conversations, I can have this knot of anxiety in my stomach because people are talking about things I should know but I’ve forgotten,” she told the Daily Mail.

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