A multidisciplinary look into transgender and gender diverse people with epilepsy: An at-risk and underreported population

Epilepsia. 2025 May 19. doi: 10.1111/epi.18454. Online ahead of print.

ABSTRACT

The literature describing transgender (TG) and gender-diverse (GD) people with epilepsy (PWE) is sparse. Gender-affirming care (GAC) can impact epilepsy management due to interactions with anti-seizure medications (ASMs) and the potential effects on seizure control. This is the first study to use clinically-verified data to comprehensively describe this population and the impact of GAC. In this single-center, cross-sectional study, we collaborated with GAC providers to review electronic health records of TG and GD PWE 18 years of age and older. Participants were found by International Classification of Diseases, Tenth Revision codes along with demographic data then stratified by GAC status. Manual chart review confirmed diagnoses and collected data relating to epilepsy history, GAC, and psychiatric history. Descriptive statistics and non-parametric tests were used for analysis to compare those who had received vs not received GAC. Of 120 646 PWE, 65 (0.05%) met inclusion criteria. Among them, 62% identified as TG and 52% received GAC. The majority (80%) started GAC after epilepsy diagnosis. In addition to higher rates of comorbid attention-deficit/hyperactivity disorder in individuals who did not receive GAC, there were no significant differences in epilepsy care or psychiatric comorbidity in those who received vs did not receive GAC. Of the whole cohort, 68% of patients had suicidal ideation, 35% suicide attempt, and 29% had psychogenic nonepileptic seizures. We found that despite GAC status there was no significant difference in epilepsy care or ASM prescriptions. Regardless of GAC, the cohort had high rates of suicidal ideation and suicide. Although larger studies are needed, high psychiatric comorbidity, along with potential interactions of GAC with certain ASMs and seizure control, highlights the need for a multidisciplinary approach in caring for TG and GD PWE.

PMID:40387193 | DOI:10.1111/epi.18454