Recent research highlights that transgender and gender diverse (TGD) people in the United States report reduced health-related quality of life compared to people who are cisgender. Similarly, sexual and gender minorities (SGM) face discrimination concerns in health care settings, leading to delays in care, negative health outcomes and increased mortality. People with epilepsy (PWE) also report low health-related quality of life and high health-related stigma. Despite these known disparities, little research has explored the overlap between these two groups.

In a recent study published in JAMA Neurology July 22, 2024, researchers compared the prevalence of epilepsy among sexual and gender minorities in the United States with that of epilepsy in heterosexual, cisgender people. Findings show that sexual and gender minorities were twice as likely to report active epilepsy as nonsexual and gender minorities.

“It’s important for us as physicians to recognize all aspects of an individual’s life that might affect their health,” says Emily Johnson, M.D., associate professor of neurology at Johns Hopkins. “Understanding the overlap of the epilepsy community and the LGBTQ community can help us provide better care. Since epilepsy is a highly treatable condition for many people, we need to figure out why the LGBTQ community is disproportionately affected and how best to make sure all people with epilepsy receive the right care."

Researchers examined data from the population-based, cross sectional National Health Interview Survey (NHIS) from 2022, in which participants self-reported demographics, including sexual orientation and gender identity.  Participants were also asked if they had ever been diagnosed with epilepsy or a seizure disorder, and they were questioned about their seizure frequency and medication use. Active epilepsy was defined as having an epilepsy diagnosis and either current use of antiseizure medication or at least one seizure in the past year. Individuals were classified as SGM if they self-reported a transgender or nonbinary/other gender identity, or if they identified as gay, lesbian, bisexual or another identity excluding heterosexual. Researchers then used logistic regression to estimate the association of epilepsy with sexual and gender minority status.

Of the 27,624 participants (54% women, 12% Black), who represented 255,174,326 adults through weighted sampling data, 1.2% of participants, representing over 3 million people, had active epilepsy. Among respondents, 6.6% reported LGBQ+ sexual orientation, and 0.67% reported TGD identity. PWE were more likely to report having white or other/multiracial identity, non-Hispanic ethnicity, lower educational status, lower household income and increased rates of depression.

After adjusting for age, race, ethnicity, income and education, SGM individuals were more than twice as likely to have active epilepsy than non-SGM individuals. Specifically, 3.5% of people who are transgender, 1.5% of people who are gender diverse/nonbinary and 2.4% of LGBQ+ individuals had active epilepsy, compared to 1.1% of non-SGM individuals.

Notably, functional neurologic symptoms such as nonepileptic seizures, which are elevated in sexual and gender minority individuals, may lead to self-reported epilepsy diagnoses. Researchers say the Centers for Disease Control and Prevention (CDC) uses this methodology of ascertaining active epilepsy to assess the burden of epilepsy in the U.S. population, making these results appropriate for comparing epilepsy in SGM and non-SGM individuals.

Although the prevalence of epilepsy is higher in the SGM community, the causality is unclear. Researchers say the reasons for this disparity are complex and may be related to biological and psychosocial determinants of health unique to this population, as suggested by minority stress theory, a hypothesis that social, psychological and structural factors can lead to mental health inequalities for minority groups.

"Minority stress theory recognizes that structural and systemic discrimination, as well as individuals’ experiences, can lead to an accumulation of stressors with negative physical and mental effects,” says Johnson. “We are still learning how these might play a role in the prevalence of epilepsy observed in the SGM community.”

As SGM individuals in the U.S. face eroded legal protections, internalized stigma and tangible threats of violence with an increased chance of physical assault, SGM individuals face a heightened risk of detrimental physical and mental health effects of chronic stress.

Additionally, specific neurologic health disparities affect the SGM community. For example, transgender women, especially those receiving feminizing hormone therapy, are at elevated risk of multiple sclerosis and ischemic stroke. There are bidirectional interactions between antiseizure medications and sex hormones, as well as effects of sex hormones on seizures — exogenous estrogen may worsen seizure frequency in people with epilepsy.

“It’s important for us as physicians to recognize all aspects of an individual’s life that might affect their health,” says Johnson. “Understanding the overlap of the epilepsy community and LGBTQ community can help us provide better care — for example, thinking about medication interactions with hormonal treatments, personalizing treatment when setting childbearing goals, or recognizing the social supports and resources for each patient.”

Future research with patient-level data is needed to determine and assess the causes of the high prevalence of epilepsy in SGM, such as exploring the overlap between these communities, with focus on comparing seizure types and age of epilepsy onset. Best practices for ensuring access to care for epilepsy in sexual and gender minority communities should also be examined.

“We need to follow people with epilepsy who are initiating gender-affirming treatment to learn if there are any effects of hormonal therapy on their seizure frequency,” says Johnson. “We also know that in general, transgender and gender diverse individuals have increased morbidity and mortality compared to cisgender individuals. We need to understand what specific barriers there are for accessing epilepsy care, and how we can improve them.”

Looking ahead, researchers say these findings emphasize that everyone needs protected access to medical care.

“In epilepsy, where uncontrolled seizures carry high risks but where many people can have seizures controlled with the right treatments, being able to have the right medical care is of utmost importance,” says Johnson. “However, people in minority groups may be at risk for not accessing care due to fear of discrimination or lack of health insurance. Especially depending on the legal or political climate, some people may delay, avoid or not be able to receive the care they need.”

The NHIS is funded by the CDC. Emily Johnson is supported by National Institutes of Health grant NIA K23 AG063899.