Helen Stephens is a young woman with epilepsy and a great deal of courage. She is in a new photographic project to raise awareness of this serious neurological condition. She has allowed her former boyfriend, professional photographer Matt Thompson, to take a series of portraits of herself when she is having a major seizure and when she is "zoning out" in a number of "little seizures".

"Now I finally see why my friends and family have called me Space Cadet and Dolly Day Dream," she writes poignantly in a commentary that accompanies the photographs, as she comes "face to face with a massive unseen part of me". Helen was diagnosed when she was 19. "I wonder how different things would be now if I'd been diagnosed when I was a child," she asks. Her aim, she says, in the Observer today, is "to explain the emotional side".

More than 600,00 people in the UK suffer from epilepsy, 87 a day are diagnosed. According to the charity Epilepsy Action, there are more than 40 types of seizure that can also trigger depression, anxiety and psychosis. A damning report published last year, A Critical Time for Epilepsy, said that services are not meeting need.

People are waiting too long to see a specialist and individuals with difficult to control epilepsy are not being referred for other treatments. Three-quarters of those having seizures have never been referred to a specialist centre to investigate other treatments such as surgery. That dearth of good practice must be addressed urgently.

In the case of Helen, she manages her epilepsy with a combination of drugs but the struggle means she can't hold down a full-time job, and the battle is depleting. Her willingness to show the public the toll that the illness takes matters to her personally. "Being able to talk about weakness makes you strong," she says. But it also matters to the rest of us, in challenging the misunderstandings and stigma still associated with the condition.