Every year on October 18th, the global epilepsy community comes together to observe International SUDEP Action Day. This day serves as a reminder of the importance of understanding and addressing Sudden Unexpected Death in Epilepsy (SUDEP). For individuals living with epilepsy and their loved ones, SUDEP can be a source of great concern. In this blog post, we will delve into understanding SUDEP, its prevalence, ways to reduce the risk, and offer support for families and caregivers who may be living in fear.
For a personal story – please take a read here to learn more about how a family has been impacted by SUDEP: Fighting Epilepsy in Memory of Micayla
Understanding SUDEP
SUDEP is a tragic and devastating event where an otherwise healthy individual with epilepsy dies suddenly and without explanation. This occurs usually during or after a seizure, and no other cause of death can be identified through autopsy. While rare, SUDEP is a stark reality for some within the epilepsy community.
Statistics and Prevalence of SUDEP
Though rare, SUDEP is a significant concern. It’s estimated that SUDEP occurs in about 1 in every 1,000 people with epilepsy each year (Harden et. al., 2017). While SUDEP can affect individuals of all ages, it’s more commonly reported in younger individuals, particularly those aged 20-40. The risk of experiencing SUDEP is closely tied to the frequency and control of seizures. Individuals with frequent and uncontrolled seizures face a higher risk, while those with infrequent seizures or well-managed epilepsy have a lower likelihood of experiencing SUDEP.
The presence of additional medical conditions alongside epilepsy can potentially increase the risk of SUDEP. Conditions such as cardiovascular issues or respiratory disorders may contribute to a higher risk profile. These statistics highlight the importance of understanding SUDEP and taking proactive measures to mitigate its risk.
Reducing the Risk of SUDEP
While we cannot eliminate the risk entirely, there are steps that individuals with epilepsy can take to reduce the likelihood of SUDEP:
- Medication Adherence: Consistently taking prescribed medications is crucial in managing seizures.
- Regular Medical Check-ups: Regular visits to a healthcare provider can help in monitoring seizure activity and making necessary adjustments to treatment plans.
- Seizure Diaries and Monitoring Devices: Keeping track of seizures can provide valuable insights for healthcare providers. Additionally, specialized monitoring devices can alert caregivers in the event of a seizure.
- Lifestyle Adjustments: Adequate sleep, stress management, and avoiding triggers can contribute to better seizure control.
Support for Families and Caregivers
Living with the fear of SUDEP can be incredibly challenging for families and caregivers. It’s important to seek support and resources to navigate this emotional journey:
- Professional Counselling and Therapy: Mental health professionals can offer coping strategies and emotional support.
- Support Groups: Connecting with others who are experiencing similar concerns can provide a sense of community and understanding. If you’d like to take part in our support groups, please email clientservices@epilepsydurham.com to join.
- Education and Awareness: Learning more about SUDEP and epilepsy can empower families and caregivers to better support their loved ones.
Resources and Support Organizations
For additional information and support, consider exploring the following resources:
Understanding SUDEP is a critical step in providing the best care and support for individuals living with epilepsy and their families. By being informed, proactive, and seeking the right resources, we can work towards reducing the risk of SUDEP and offering a stronger support network for those who need it most.
References:
- Hesdorffer, D. C., & Tomson, T. (2011). Sudden unexpected death in epilepsy: potential role of antiepileptic drugs. CNS drugs, 25(5), 421-432.
- Harden, C., Tomson, T., Gloss, D., Buchhalter, J., Cross, J. H., Donner, E., … & French, J. A. (2017). Practice guideline summary: Sudden unexpected death in epilepsy incidence rates and risk factors: Report of the Guideline Development, Dissemination, and Implementation Subcommittee of the American Academy of Neurology and the American Epilepsy Society. Neurology, 88(17), 1674-1680.