My Epilepsy Story

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IT’S NOT JUST SEIZURESTM: Quality of Life Survey

Epilepsy is so much more than just a medical diagnosis. Quality of life can often be overlooked and the impact of living with seizures on self and family is limitedly understood. To better improve on this aspect of epilepsy care, My Epilepsy Story is partnering with Seizure Tracker to promote a series of surveys that will illuminate the most influential life factors on seizure care and treatment.

Woman Silhouette Electrical Discharge In Head to Indicate Seizure

Our partner, Seizure Tracker, has collaborated with University of California, San Francisco (UCSF), in addition to various other patients, health providers, and organizations to develop the IT’S NOT JUST SEIZURESTM Quality of Life survey that aims to assess what are the most impacting psychosocial, cognitive, socioeconomic, and other social/health factors on epilepsy care and treatment. More clarity on the influence of epilepsy on all aspects of one’s life and how circumstances of one’s life can reciprocally affect quality of seizure treatment is critical to improve patient outcomes and experience. This survey will also allow for the identification of vulnerable subgroups and the development of more individually targeted care and tools for patients.

We encourage all patients with epilepsy to complete the IT’S NOT JUST SEIZURESTM Quality of Life surveys, in addition to caregivers of people with epilepsy, healthcare providers to people with epilepsy, and epilepsy researchers. Robust participation will improve the quality of data, so we also encourage you to share the IT’S NOT JUST SEIZURESTM Quality of Life surveys on social media!

More information regarding the main topics of the surveys is available, here, on the Seizure Tracker website.

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We are an International, non-profit organization that serves to bridge the gap for women and girls diagnosed with epilepsy.

Disclaimer: Education materials on our website offer general medical information based on up-to-date evidence and, when available, practice guidelines. They are not intended for individual medical advice. Please refer to your treating physician to understand how this information may be applied to your care.

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We are an International, non-profit organization that serves to bridge the gap for women and girls diagnosed with epilepsy.

Stay Updated

Receive valuable content and personal stories from other women and girls just like yourself.

Disclaimer: Education materials on our website offer general medical information based on up-to-date evidence and, when available, practice guidelines. They are not intended for individual medical advice. Please refer to your treating physician to understand how this information may be applied to your care.

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