Epilepsy.com is an online resource provided by The Epilepsy Therapy Development Project. Our mission is to inform and empower two groups of patients and their families: those facing newly diagnosed epilepsy, and those struggling with epilepsy that has resisted treatment. Approximately 120,000 people visit epilepsy.com each month and read over 500,000 pages of information.

As editor-in-chief, I oversee all the content on epilepsy.com. Believing that knowledge is empowering, we strive to present information about all the medical and psychosocial aspects of epilepsy. No topic is off-limits, including SUDEP. 2,000 to 3,000 people read this page each month.

In addition to content on epilepsy.com, we have an active Community Forum, where over 4,000 members communicate with one another, ask questions and share personal insights about their experiences with epilepsy.

SUDEP is a common topic discussed on the Community Forum. Family members and friends express their fear that the person with epilepsy will die from a seizure, or have severe brain damage, and are particularly concerned when during a seizure their friend stops breathing and turns blue. While most participants know that death from seizures rarely occurs, and that when it does it generally is associated with severe and uncontrolled seizures, some people are clearly misinformed. One person said that a neurologist had assured him that no one has ever died from a seizure, but that continuous seizures could cause enough heart damage to cause a heart attack. Another said that most neurologists ‘play down’ SUDEP. Yet another said ‘The doctors and nurse educators do not talk about SUDEP. I mentioned it to the nurse after reading it online and she said it is very rare and not to worry. In all her 20 years of experience, she had only one patient die of SUDEP. She was interested to hear that it is being talked about on the web and that maybe they need to consider it as part of their patient education’. One person said, ‘One of my problems, I realise after researching epilepsy on epilepsy.com, is that my doctor did not do his job of educating me about my condition. He never explained how or why my medication would work and why I should take it regularly. If I had known how it worked, then I probably would have taken it more often. If he had educated me about SUDEP or had referred me to epilepsy groups, things may be different.’

Several participants in the Community Forum have been touched personally by SUDEP. They search for answers and understanding. A wife lost her husband. ‘I was never told of the risk that my husband might die from a seizure. He had instructed me NEVER to call 911 (he found it humiliating and unhelpful). ‘It’s not going to kill me’, he said. My husband died of SUDEP at the age of 40.’ A mother lost her 18-year-old daughter:

I think that says it all. We will continue to add new information to epilepsy.com about SUDEP as it becomes available.

Steven C Schachter, Professor of Neurology
Harvard Medical School, Boston, Massachusetts, USA

Reprinted with the permission of Epilepsy Australia-the national coalition of Australia epilepsy associations and Epilepsy Bereaved UK.