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Mindy Gibbins-Klein

Epilepsy claims up to 42,000 American lives each year. Up to 40 percent of these could be prevented with better care and treatment, a UK audit reveals.

Shocking statistics have come to light through research into epilepsy related deaths. U.S. deaths are estimated at 22,000 to 42,000 per year – mostly due to shortfalls in the care and treatment of people with epilepsy. According to a UK audit conducted in May 2002, the death toll could be reduced by up to 40 percent with proper research and increased awareness. However, very few additional programs have been created since the audit. Up to 115 people will still die unnecessarily today, up to 16,800 preventable deaths this year.    

Half of all epilepsy related deaths are caused by prolonged seizures and accidents resulting from them. The other half, worryingly, are attributed to SUDEP (Sudden Death in Epilepsy). Experts assume these deaths are related to the victim’s condition. Suicides are also far too numerous, with many sufferers unable to cope with the fear and uncertainty of imminent seizures and possibly sudden death. Author Mindy Gibbins-Klein is outraged. Inspired by the tragic loss of two friends, Gibbins-Klein published the novel A Dance in the Desert in 2001. The book explores a life that will forever be altered, and takes a hard look at the ramifications of social ignorance surrounding epilepsy, poignantly highlighting in the process the beauty and value of life, so often taken for granted. A portion of the proceeds from every book sold is donated to epilepsy research.

Along with millions of people in the UK, where Ms. Gibbins-Klein resides, she expected a public outcry and immediate action after the UK audit, which promised a plan within three months of its publication. To date, over one year later, there is still no such plan. “The silent killer must be unmasked and faced head-on, which means research, and research costs money” says Gibbins-Klein. “Epilepsy is not something we like to talk about, but the figures speak for themselves. How many more people need to die unnecessarily before action is taken? Epilepsy needs to be much higher on the agenda to further medical advances and save lives.”

Ms. Gibbins-Klein is training to become an Accredited Volunteer for Epilepsy Action, part of the British Epilepsy Association (www.epilepsy.org.uk" href="http://www.epilepsy.org.uk" target="_blank">www.epilepsy.org.uk) who, together with the U.S.-based Epilepsy Foundation (www.epilepsyfoundation.org" href="http://www.epilepsyfoundation.org" target="_blank">www.epilepsyfoundation.org), is relentless in the quest for increased awareness, funding and action to help people with epilepsy and their families.

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