Epilepsy is one of the most common neurological disorders, impacting millions worldwide, including many in the Phelan-McDermid syndrome community. Approximately 50% of individuals with Phelan-McDermid syndrome experience at least one seizure in their lifetime, and 32% are diagnosed with epilepsy. The most common type of seizure in Phelan-McDermid syndrome, atypical absence seizures, can be difficult to detect, which is why routine EEGs are recommended for anyone showing signs of seizures or epilepsy.
This month, we’re focusing on raising awareness, sharing important resources, and supporting epilepsy research, which is a priority for the Phelan-McDermid Syndrome Foundation. We also wanted to highlight the Epilepsy Foundation’s “Change Our Epilepsy Story” campaign to encourage individuals and caregivers to share their experiences, helping educate others and address stigma.
In addition, we’re spotlighting key insights from the European and International Clinical Care Guidelines on Epilepsy & EEG Abnormalities, which provide essential recommendations for managing epilepsy in Phelan-McDermid syndrome.
Join us throughout November as we continue to advocate for better care, understanding, and support for individuals and families affected by epilepsy. Together, we can make a difference!
For more information, check out our resources below.