Transgender and Gender Diverse People with Epilepsy: A Follow Up Study
Abstract number :
2.319
Submission category :
6. Cormorbidity (Somatic and Psychiatric)
Year :
2025
Submission ID :
767
Source :
www.aesnet.org
Presentation date :
12/7/2025 12:00:00 AM
Published date :
Authors :
Presenting Author: MarieElena Byrnes, DO, MS – Cleveland Clinic
Mia Probinsky, DO, MS – Cleveland Clinic
Jessica Fesler, MD, MEd, FAES – Cleveland Clinic
Rationale: Literature into transgender (TG) or gender diverse (GD) people with epilepsy is sparse. We have previously published results of our single center cohort of TG or GD people with epilepsy (PWE).1 We found high rates of psychiatric comorbidity, specifically suicidal ideation (SI) and attempt (SA), along with psychogenic nonepileptic events (PNES) when compared to reports of the overall epilepsy population.2,3 TG and GD patients unfortunately suffer from healthcare discrimination and bias which has been shown to increase suicidality and leads to avoidance of medical care.4 Studies have shown that gender affirming care (GAC) may lead to decreased suicidality, suicide attempt and improved mental health outcomes in the TG or GD population as a whole; but the degree to which this may translate to TG or GD PWE has not been ascertained.5,6
Methods: In this single-center, cross-sectional study we reviewed electronic medical records (EMRs) of TG and GD PWE aged 18 and older who had underwent or were undergoing GAC in the form of hormonal or surgical therapies. Participants were found by ICD-10 codes along with demographic data stored in our institution’s EMR. Manual chart review was completed to confirm all relevant diagnoses including epilepsy and epilepsy history, GAC history and psychiatric comorbidities. Clinical notes after the start of GAC were reviewed to document the use of preferred pronouns and patient names. Descriptive statistics and non-parametric tests were used for analysis.
Results: Thirty-four TG or GD PWE who have underwent GAC were included in the study. Of these, 12 (35.3%) were also diagnosed with comorbid PNES, 24 (70.6%) had a history of SI with 14 (41.2%) a history of SA. In those with a history of PNES, only 1 (8.3%) was diagnosed with PNES prior to their epilepsy diagnosis. In those with history of SA, 7 (54.8%) had SA prior to the initiation of GAC and 10 (71.4%) after their epilepsy diagnosis. The majority of patients had their preferred pronouns (31; 91.20%) and preferred names (30; 88.2%) designated in the EMR. Eleven (35.5%) patients had been misgendered and 13 (43.3%) had their “dead name” or nonpreferred name used in the EMR by their epilepsy provider (neurology, epilepsy or primary care).
Conclusions: Transgender and gender diverse people with epilepsy have high risk for psychiatric comorbidity including SI and SA. We found that in those with history of SA, the majority had SA prior to starting GAC but after epilepsy diagnoses. Highlighting the unique psychological burden of these patients and perhaps providing further evidence for the benefit of GAC. We also found that despite almost the whole cohort having their preferred pronouns and names listed in the EMR, more than a third had been misgendered and a little less than half had their “dead name” or nonpreferred name documented in clinical encounters by their epilepsy provider. Providers need to be cognizant of these subtle, but detrimental, biases in order to adequately care for this at-risk patient population.
Funding: None
Cormorbidity (Somatic and Psychiatric)