The varying patient journeys of those who have experienced focal onset seizures compared to those who haven’t can lead to different clinical care paths. Specifically, one-third of respondents who have experienced focal seizures said the primary healthcare professional they see for their epilepsy is an epileptologist – a neurologist specializing in epilepsy care – compared to 13% of respondents who haven’t experienced a focal seizure. They are also more likely to have participated in epilepsy clinical trials.
Respondents who have had focal seizures also identified themselves as experiencing a more negative quality of life. Specifically, they were more likely to say the stigma associated with epilepsy has affected their lives. They were also more likely to say they have experienced discrimination, isolation and reduced productivity at work.
“Epilepsy is an immensely varied condition, and people living with epilepsy sometimes find themselves without the detailed information, support, and validation they need,” said Olivier Chateau, Health Union’s co-founder and CEO. “EpilepsyDisease.com aims to provide these individuals with a safe, supportive environment as they manage a condition that often includes an array of challenging symptoms and quality of life implications.”
The inaugural Epilepsy In America survey, which was fielded from Jun. 10 to Aug. 26, 2021, included responses from 415 people living with epilepsy. Additional survey results may be available upon request. More information about living with epilepsy can be found on EpilepsyDisease.com.
About Health Union
Health Union, with the recent acquisition of WEGO Health, maintains the largest team of experts, patient advocates and healthcare leaders dedicated to social health. The company encourages social interactions that evolve into valuable online health conversations, helping people with chronic conditions find the information, connection, and validation they seek. Health Union does this by creating condition-specific online communities – publishing original, daily content and continuously cultivating social conversation – to support, educate and connect millions of people with challenging, chronic health concerns. Health Union’s growing portfolio of condition-specific communities includes 38 online health communities, including LungCancer.net, ParkinsonsDisease.net, MultipleSclerosis.net and Migraine.com.