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Leader Perspectives

Our Commitment to the Epilepsy Community

Ryan Bovia

November is National Epilepsy Awareness Month – a milestone that allows us to pause and reflect on both the progress the community has made for people living with this condition and their continued unmet needs. This time of reflection is especially important for people diagnosed with rare forms of epilepsy, as well as their caregivers, who are continuing to search for improved therapeutic outcomes.

Neurological disorders like epilepsy can have significant, life-altering implications for patients, their families and caregivers. Specifically, within the epilepsy field, there is a large unmet patient need as approximately one million people living with epilepsy are resistant to current treatments, with an estimated 160,000 of those being pediatric patients.1

Seizures associated with Lennox-Gastaut syndrome (LGS), Dravet syndrome (DS), or tuberous sclerosis complex (TSC) also disproportionately impact children, often causing a significant emotional and financial strain on the families of individuals living with severe forms of epilepsy. Family members often must either leave the workforce or find significant financial resources to hire caregiving professionals to assist with round-the-clock care.

These disorders often negatively affect patients’ quality of life. Seizure disorders can impact children’s cognitive, executive and emotional function, as well as cause language setbacks, sleep problems, attention deficit, and diminishment of physical functioning.

This November, my colleagues and I are reminded of our commitment to patients and their families through our pursuit of innovative treatments in complex diseases, including LGS, DS and TSC. People living with these challenging neurological conditions deserve a day-to-day life that is as close to their friends as possible, and we are determined to continue educating and advancing in order to better their care.

I encourage you to visit the Epilepsy Foundation’s website to learn more about National Epilepsy Awareness Month and to see how you can get involved.

References

  1. Epilepsy Foundation. Drug-Resistant Epilepsy. Available at: https://www.epilepsy.com/learn/drug-resistant-epilepsy. Accessed October 2023.