An e-toolkit containing the latest research-based material aimed at providing information about sudden unexpected death in epilepsy (SUDEP) to four main target groups is now available online.
The e-toolkit, which is available on SUDEP Aware’s website, contains key information pamphlets targeting health-care providers, people bereaved by SUDEP, teens and young adults, and people with epilepsy.
“Our goal is to work with willing collaborators to produce consistent, up to date, reliable information about an issue that is hard to talk about and one where people can become misinformed,” says SUDEP Aware co-founder and neurologist Dr. Elizabeth Donner.
Donner adds that although there is an abundance of information about SUDEP available online, much of the material is outdated. Epilepsy research is a field that’s rapidly evolving, so the organization wanted to produce the most up-to-date online content possible.
For example, the No. 1 SUDEP risk factor cited by experts today is a high number of tonic-clonic seizures, whereas even 10 years ago other factors were being listed.
Given the SUDEP risks associated with a high number of tonic-clonic seizures, people affected by epilepsy need to understand there are things they can do to reduce their risk.
“People with epilepsy should work with their health-care team to reduce the number of seizures they are having and that, we believe, will reduce their risk of SUDEP,” says Donner.
“The idea behind this e-toolkit is going to be (providing) really high-quality, reliable information.”
The added advantage to having this information available online is that it’s easy for SUDEP Aware to update data as needed, says Donner.
Donner says the best result that could stem from the e-toolkit, which will be continuously updated, is simple: awareness.
She adds a quote from the e-toolkit underscoring the value of awareness.
“Awareness is the first step towards finding the cause and prevention of SUDEP. People with epilepsy should be informed of all the risks of their conditions and how to lower those risks. Having this information allows them to make decisions that could possibly save their lives.”
SUDEP Aware was formed by Donner and Tamzin Jeffs, SUDEP Aware’s executive director. SUDEP Aware’s mission is to increase education, awareness and support.
Jeffs has personal reasons for co-founding SUDEP Aware; she was diagnosed with the neurological disorder several years ago and her youngest sister died as a result of epilepsy five years ago.
“I found myself unable to find the information and support I needed and felt should have been available to me. To help address this, I joined forces with paediatric neurologist Dr. Elizabeth Donner to co-found SUDEP Aware,” says Jeffs.
Adding to the need for an online resource like SUDEP Aware is the fact that families often first learn about SUDEP after a loved one dies from it.
“This e-toolkit was developed to lower the likelihood of that happening to others (and) to help address the questions and concerns families may have about SUDEP and to (facilitate) the discussion of SUDEP between families and their health-care providers,” says Jeffs.
The e-brochures and e-toolkit are being made available as part of the SUDEP Aware’s Making Sense of SUDEP awareness campaign.
Anyone wishing to download any of the four new e-brochures can do so by clicking here.
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Writer: Deron Hamel