Epilepsy: let’s finish our ignorance of this neglected problem | Observer editorial

epilepsy, editorial

Wonderful Ormond Street hospital’s brain scan device for youngsters with epilepsy. Photograph: Frank Baron for the Guardian

Helen Stephens is a youthful woman with epilepsy and a wonderful deal of courage. She is in a new photographic venture to raise awareness of this severe neurological issue. She has permitted her former boyfriend, expert photographer Matt Thompson, to consider a series of portraits of herself when she is possessing a main seizure and when she is “zoning out” in a variety of “little seizures”.

“Now I last but not least see why my close friends and household have referred to as me Area Cadet and Dolly Day Dream,” she writes poignantly in a commentary that accompanies the images, as she comes “face to face with a huge unseen element of me”. Helen was diagnosed when she was 19. “I wonder how different factors would be now if I’d been diagnosed when I was a youngster,” she asks. Her aim, she says, in the Observer these days, is “to describe the emotional side”.

A lot more than 600,00 folks in the Uk suffer from epilepsy, 87 a day are diagnosed. According to the charity Epilepsy Action, there are a lot more than 40 sorts of seizure that can also set off depression, anxiety and psychosis. A damning report published final 12 months, A Vital Time for Epilepsy, explained that services are not meeting need.

Individuals are waiting too prolonged to see a professional and folks with difficult to control epilepsy are not currently being referred for other treatment options. Three-quarters of people possessing seizures have never ever been referred to a specialist centre to investigate other treatment options such as surgery. That dearth of excellent practice have to be addressed urgently.

In the case of Helen, she manages her epilepsy with a mixture of drugs but the struggle signifies she cannot hold down a full-time work, and the battle is depleting. Her willingness to show the public the toll that the sickness will take matters to her personally. “Getting ready to speak about weakness makes you robust,” she says. But it also issues to the rest of us, in demanding the misunderstandings and stigma nonetheless related with the situation.

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