IN 1990 Jane Hanna lost her husband Alan Pring when he died suddenly from an epileptic seizure.

Five years later, the law fellow at Oxford’s Keble College and a group of four other women who had lost loved ones to sudden unexplained death in epilepsy (SUDEP), came together to form the charity SUDEP Action.

Nineteen years on, the charity held its first SUDEP Awareness Day on Thursday, with chief executive Ms Hanna hopeful that more lives will be saved as a result of making people aware of the condition.

She said: “We decided to hold an awareness day because the research still shows that most people with epilepsy are getting their information from the Internet rather than from a medical professional.

“It’s important that people living with epilepsy have a good discussion with their medical team about their epilepsy and know how do reduce their risk.”

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The charity, based in Wantage, works with epilepsy sufferers to help make them aware of the risks posed by the condition.

The event was supported by Wantage MP and Culture Minister Ed Vaizey, who has been appointed as the charity’s first president. He hosted a reception at the Houses of Parliament in Westminster on Thursday.

Volunteers from the charity ran an information stall at the Sainsbury’s supermarket in Wantage and people from across the world were encourged to take part in a lemon-sucking campaign on social media.

Participants suck a lemon and then post the picture on Facebook or Twitter, with the image representing the bitter grief suffered by families of those affected by the condition.

SUDEP communications manager Juliet Tumeo said: “It was a fantastic day. We had many people visiting our stall for the colourful cakes and information leaflets.

“We had a lot of interest from people who have friends with epilepsy and some people with epilepsy but had never heard of SUDEP.

“They wanted to know more about what they can do to stay safe and took away our ‘Be smart, be safe’ leaflets, which highlight ways in which people with epilepsy can reduce their risk of SUDEP.

“At the end of the day all cakes and most of the leaflets were gone. We even had people coming back for seconds.”

Juliet Tumeo with leaflets at the awareness day event at Sainsbury’s in Wanage.

Ms Hanna’s husband, a barrister, died at the age of 27. Sudden unexplained death in epilepsy particularly affects people in their 20s and 30s.

Doctors cannot be certain why this is the case, but part of the reason may be lifestyle choices at this age, such as moving away from home and changes in diet.

Ms Hanna, 51, said she did not want anyone else to go through what she experienced when her husband died.

She said: “It was like an explosion going off in my life.

“There was no point of reference, because at the time my husband believed the epilepsy was benign and a seizure would not be fatal.

“I want more people to understand what SUDEP is.

“We’re trying to help families ask questions and support them through their grief.”

Mr Vaizey said: “I’m honoured to be the first president of SUDEP Action. I’m also delighted to be supporting SUDEP Awareness Day, which I hope will help many more people to be aware of the risks some of us face and, in particular, how they can be minimised.”

  • To find out more, visit sudep.org or call 01235 772850.

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