SUDEP conference aiming for mass engagement, increased awareness

May 10, 2012

An upcoming three-day conference near Chicago in June will bring people representing clinical, basic science and patient/family communities together to get important information related to sudden unexpected death in epilepsy (SUDEP).

“We’re trying to bring those three groups together to participate in a meeting that will still be high-level academic with some very high-level basic science and clinical research presented, but interspersed with sessions that deal with issues such as talking about SUDEP, how we talk about and why we talk about,” explains Dr. Elizabeth Donner, a Toronto-based neurologist and one of the Partners Against Mortality in Epilepsy (PAME) conference organizers.

While the conference will have a large scientific component, organizers are underscoring the importance of engagement from the non-scientific community. People with epilepsy and their families and caregivers can use the event as an opportunity to learn about ways to contribute to research, for example.

SUDEP is a serious issue facing people with epilepsy, says Donner. SUDEP is an unexpected and unexplained death occurring in people with epilepsy. SUDEP can be related or unrelated to a seizure.

With a rate of approximately one death in 1,000 people affected by epilepsy per year, SUDEP is more common than many perceive, says Donner. When the rate of SUDEP is calculated to include only people with uncontrolled epilepsy, or seizures not regulated with medication, the number spikes to about one in 100.

“It’s a serious problem and there has been reluctance amongst people with epilepsy and their caregivers to speak about it,” says Donner.

Donner hypothesizes that the reluctance to talk about SUDEP stems from people believing there’s nothing that can be done to prevent it.

“One of the most important outcomes that we’re hoping for from the meeting is improved awareness of the condition,” says Donner. “(We hope) that every person that attends this meeting goes back to their own hospital, community, office — wherever they’ve come from — and talks a little bit about this.”

Increased awareness, she adds, will help move forward the scientific community researching SUDEP.

“Awareness is the first step in advancing the cause of finding a method of prevention,” says Donner.

In addition, one of the goals of the conference is to inform people that there are ways to reduce the risk of SUDEP.  For a person with epilepsy, working with their health-care providers to reduce the frequency of seizures is the most effective way to reduce the risk of SUDEP.

Tamzin Jeffs, who, along with Donner, co-founded SUDEP Aware, an organization dedicated to raising awareness and understanding of SUDEP, says PAME will be an excellent forum for people living with or bereaved by epilepsy to share their experiences.

“PAME will improve awareness of SUDEP research currently underway and in planning,” says Jeffs, who will be one of the moderators at the PAME sessions.

“Research participation opportunities, available to people living with epilepsy and people bereaved by epilepsy, will also be discussed.  Taking part in research studies can help bring some comfort, hope and a sense of contribution to the families.”

The conference will be held June 21-24 at the Hilton Orrington in Evanston, Illinois.

More information, including registration details, can be found by clicking here.

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Writer: Deron Hamel

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