Whether it be stifling heat, overwhelming stress, or a noisy neighbour, we’ve all suffered the horrors of a sleepless night and the irritability that follows.
But what if your insomnia became permanent? What if it became life-threatening?
In Sleepless theatre company Analogue explores the terrifying effects of fatal familial insomnia (FFI) an extremely rare genetic condition, which begins to present symptoms in adulthood and causes insomnia, panic attacks, paranoia, hallucinations, weight lose, dementia and finally death.
“The impact is quite horrific,” said co-writer and director Hannah Barker. “People are literally fighting between sleep and wake. They are stuck in this horrible no-mans land.”
The disease is thought to be caused by a protein mutation which causes damage in the thalamus section of the brain, which controls sleep. There is no known cure and sufferers usually die less than two years after the symptoms kick-in.
The idea to create a play about it came when the artistic director of Shoreditch Town Hall gave Analogue, which Hannah co-founded in 2007, a book chronicling the condition – The Family Who Couldn’t Sleep.
“We were pulled in by a range of things, first of all the extremity of the disease, which usually kicks in at child-bearing age,” said Hannah. “You sweat a lot, your pupils become like pinpricks and suddenly, from that day forward you can’t sleep.
“It’s like something out of a B-movie. That in itself I thought was really fascinating. The more we started digging the more it became not just a freaky crazy disease but something more human.”
There are only around 25 families in the world who are known to carry the FFI gene.
Hannah, who managed to track down some sufferers and speak to them via email and also spoke to a professor at UCL, said: “It is rare and affects so few people that consequently it gets passed over.
“So that opens up questions about the value of a human life and how many people need to be affected for it to get funding for research.
“There is also the element of passing on a gene to your family and the responsibility of knowing you might have it and your decision to have or not have children. There are a huge number of ethical questions involved.”
Sleepless is set against the backdrop of an unfolding mad cow crisis (a related condition) and centres around Cosima Trevisan who finds out she may have FFI after her mother is found dead shortly after trying to contact her doctor.
She begins a race against time alongside Dr Graham to discover what drove her to commit such an act and to find a cure.
Hannah said: “The reason anyone knows about FFI is because of a serendipitous chance that mad-cow happened and there was suddenly lots of money on the table to do research into these prion diseases.
“But as soon as the numbers plateaued the interest went off. And that is a big part of the show, the question of how many people have to be affected by something to make it of interest.”
Although based on facts, Hannah said the play was a work of fiction as they wanted to respect sufferers’ privacy and have artistic license to shape the story as they saw fit.
“When we make shows we want to find that human story and get people who have no connection into it. I think this touches on themes that many people can relate to.
“Everyone has had nights where they can’t sleep at critical points, those moment when you think you are going crazy and all your worries come rushing in, usually on a Sunday night, all of us can tap into that.”
Thursday, September 1-14, 7.30pm, £15, Shoreditch Town Hall