��ֳ�’s commitment to understanding Sudden Unexpected Death in Epilepsy

Vandenbruaene Nathalie — Wed, 16 Oct 2024 10:42:44 +0000

Andrea Wilkinson, Patient Engagement, Epilepsy & Rare Syndromes

Vandenbruaene … Wed 16/10/2024 - 12:42

Sudden Unexpected Death in Epilepsy (SUDEP) occurs when a person living with epilepsy dies suddenly and prematurely for no known obvious reason. It is a leading cause of death in people with epilepsy and represents an unimaginable outcome for anyone living with epilepsy and their loved ones. Discussing SUDEP is challenging, yet addressing this tough subject reflects the expressed needs of individuals affected by epilepsy.

SUDEP Action Day on October 16 is dedicated to raising awareness of the risk of sudden death in epilepsy and aspires to stop preventable deaths. A time when epilepsy organisations across the world come together with a singular purpose: to encourage all healthcare providers, individuals with epilepsy and their families to actively engage in conversations about minimizing SUDEP risks and participating in shared decision-making. The benefits of shared decision-making include improved decision quality, empowering patients to make more informed choices and better treatment consistency.

For ��ֳ�, SUDEP Action Day is aligned with our mission to advance understanding around epilepsy, improve awareness, and elevate the unmet needs of patients and their families. Under this year’s theme of #OurRisksOurRights, we support the goal that every person living with epilepsy should know their SUDEP risk. Integral to this is early epilepsy diagnosis, access to plain language information, medication adherence, updated emergency seizure action plans and the need for improved care coordination.

Understanding SUDEP risk
While no one knows exactly what causes SUDEP, researchers are investigating several possibilities, like the effect of seizures on the heart, the brain and breathing. Certain factors can increase the likelihood of SUDEP, such as frequency of generalized tonic-clonic seizure (GTCS), nocturnal seizures, medication adherence and/or failure to adequately control treatment-resistant seizures.

According to the International League Against Epilepsy, optimizing seizure control, especially GTCS, is the most important measure in reducing a person’s risk of SUDEP.5 However, despite currently available antiseizure medications, 1 in 150 people with uncontrolled seizures die from SUDEP every year. Some people with rare and complex epilepsies continue to experience frequent and uncontrolled seizures and remain at a higher risk of SUDEP.

For example, children with Dravet syndrome are 15 times more likely to die suddenly. Those with Lennox-Gastaut syndrome have a 24 times greater likelihood of premature death compared to individuals with other childhood epilepsies. Emerging research estimates that SUDEP rate is 2.8 per 1,000 person-years.

It is equally shocking to learn that the risk of early death and SUDEP is higher among lower income groups. In fact, people with epilepsy who are in poor health or live on a low income tend to live about 17 years less than average and this is especially true for young and middle-aged adults.

��ֳ�’s commitment to SUDEP
At ��ֳ�, we are aligned with the patient and healthcare community’s desire to reduce preventable deaths from epilepsy by investing in research partnerships, new technologies and championing disease awareness.

SUDEP occurs most often at night or during sleep, leaving many unanswered research questions. ��ֳ� supports Neurava, a medical device start-up that has developed a first-of-its-kind device work around the neck and bicep at night which has the potential to save lives by identifying key biological signals related to epilepsy, tracking seizures and impending SUDEP risk.

Global clinical guidelines recommend counseling people with epilepsy (PWE) on sudden unexpected death in epilepsy (SUDEP). ��ֳ� proudly collaborated with the Child Neurology Foundation alongside Partners Against Mortality in Epilepsy and 20 other organizations to develop the Clinical Toolkit for Preventing Epilepsy Deaths. The toolkit focuses on behavior change by offering health providers and patients tips for on how to talk about mortality risk factors, preventative measures, and treatment options.

Looking ahead
As we advance our understanding of human biology and neurological diseases, we aim to drive innovation in epilepsy alongside clinicians, academics and patient communities. By specifically targeting the mechanisms underpinning SUDEP, we hope to identify the causes and potential biomarkers of SUDEP and reduce the major risk factors for this devastating outcome.

On SUDEP Action Day, we stand with the community and encourage everybody to raise awareness of the risks of sudden death in epilepsy. 

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Sudden Unexpected Death in Epilepsy: our commitment to supporting families and patients

Vanco Vlastimil (��ֳ� S.A.) — Wed, 18 Oct 2023 07:00:59 +0000

Sudden Unexpected Death in Epilepsy: our commitment to supporting families and patients

Judith Luker, Patient Engagement, Epilepsy and Rare Syndromes

Vanco Vlastimi… Wed 18/10/2023 - 09:00

SUDEP, or Sudden Unexpected Death in Epilepsy, refers to the unexplained death of a person with epilepsy who is otherwise healthy. It is a leading cause of epilepsy-related deaths. SUDEP Action Day, created by the charity SUDEP Action in 2014 and observed each October, plays a crucial role in raising awareness about this silent but deadly consequence of epilepsy bringing organisations worldwide together to help increase awareness of SUDEP and empower people with epilepsy.

While no one knows exactly what the mechanisms are when SUDEP occurs, there are certain factors that increase the risk of occurrence, such as the frequency of generalized tonic-clonic seizure (GTCS) and failure to adequately control treatment-resistant seizures. Research has shown that controlling seizures may lower the chance of SUDEP.

Although significant progress has been made during the past year in the understanding of SUDEP mechanisms and investigation of numerous potential biomarkers, we are still missing reliable predictors of SUDEP beyond the well-established clinical risk factors. To patients and families, SUDEP is an unthinkable aspect of living with epilepsy, and this is why we are committed to supporting the patient community on SUDEP-related issues in every way we can. We are investing in SUDEP research and are working to contribute further to the published literature in this area. We are also collaborating with other organizations on projects relevant to SUDEP; our work with Neurava, a medical device start-up, is a good example. Neurava is working on translating the discovery of a potential mechanism of action behind SUDEP into a first-of-its-kind smart wearable device capable of identifying and alerting for seizures and impending SUDEP risk - a device with the potential to save lives, and which we are proud to support in its development.

In another recent collaboration, ��ֳ� participated in an advisory workgroup with the Child Neurology Foundation in the US, along with 20 other organizations, on its Clinical Toolkit for Preventing Epilepsy Deaths. This toolkit includes resources raising awareness of potential causes of death among people with epilepsy to help individuals take preventative measures to mitigate the risk, as it is known that many epilepsy deaths could be prevented. The goal of the toolkit is to educate patients and healthcare professionals about epilepsy and address epilepsy mortality risk factors. On the Preventing Epilepsy Deaths toolkit website physicians can find materials to help them discuss preventative measures with their patients.

This year’s theme for SUDEP Action Day is #MySafetyMatters – highlighting how important it is that the epilepsy community takes action to help people with epilepsy to live as safely as possible. Putting the patient’s voice first is an important part of working at ��ֳ� and central to my role. Working closely with patients and patient organisations to understand their feelings about how the SUDEP conversation should happen, has deepened my understanding of this incredibly important and sensitive topic. At ��ֳ� we have a responsibility to do as much as we can to advance the conversation around SUDEP research, preventative care, and the needs of families.

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SUDEP Sudden Unexpected Death in Epilepsy Neurology Epilepsy

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��ֳ�’s commitment to understanding Sudden Unexpected Death in Epilepsy

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Sudden Unexpected Death in Epilepsy: our commitment to supporting families and patients

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SUDEP

������ֳ�’s commitment to understanding Sudden Unexpected Death in Epilepsy

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Sudden Unexpected Death in Epilepsy: our commitment to supporting families and patients

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��ֳ�’s commitment to understanding Sudden Unexpected Death in Epilepsy