A woman who lost her sister to epilepsy attended a special reception at 10 Downing Street hosted by Prime Minister David Cameron’s wife, Samantha, last week.
Michelle Samuel, from Heathfield, lost her little sister Diane Croft at the age of just 20 in 2004 after she died from Sudden Unexpected Death in Epilepsy (SUDEP).
The event at Downing Street launched charity SUDEP Action’s appeal for research into a sleep monitoring device that could help prevent the condition. Michelle attended the event with her husband Andrew Samuel. She has been working with SUDEP Action to raise awareness and support research into SUDEP. The charity said epilepsy claims at least 1150 lives in the UK every year and about 500 of these are SUDEP.
At the reception Mrs Cameron met charity supporters and staff.
The event brought together SUDEP experts, policy makers and families bereaved by epilepsy. Funds raised from the appeal will sponsor research into the sleep device that will be used to alert carers to dangerous apnoeas (stopping breathing) that can cause sudden death.
The device is a miniature, Wireless Apnoea Detection Device (WADD) that is proved to detect apnoeas. Professor John Duncan, of University College of London, created the device through a partnership between researchers at the National Hospital in London and Electrical Engineers at Imperial College.
Michelle said: “When Diane died, I could not imagine how life could carry on without her. Life is never the same after you lose a loved one. I still grieve but I am also proud to be involved with SUDEP Action and help prevent unnecessary epilepsy deaths.”
Jane Hanna OBE, Chief Executive SUDEP Action, said: “We are very grateful to Mrs Cameron for generously hosting us and helping us raise awareness of this issue. Apnoea is a leading contender as a cause of SUDEP. At the moment there is no reliable method to detect apnoea in the home with the consequences that there are hundreds of preventable deaths every year in the UK. We need at least £165,000 to test this device on people with epilepsy. We are grateful for supporters like Michelle and Andrew who continue to raise funds.”