According to a 2021 Gallup poll, chronic health conditions like epilepsy can affect anyone. This includes people from a variety of backgrounds, like members of the lesbian, gay, bisexual, transgender, and queer people plus community members who use different language to describe identity.
Seizures and Epilepsy in the LGBTQ+ Population
According to most recent data, about 7% of the U.S. population identify as LGBTQ+. This includes close to 2% of the population who identify as transgender, gender non-conforming, or non-binary. These numbers increase with every generation. As a result, new language has emerged, making it easier for individuals who previously did not have the words or terms to self-identify. For example, about 20% of Generation Z identifies as LGBTQ+.
Rates of active epilepsy are estimated to be 1.2% of the U.S. population, as of 2015. This averages out to at least 281,200 LGBTQ+ individuals currently living with active epilepsy.
Learn More:Forms & Resources About Epilepsy
Treatment for the LGBTQ+ Community
When members of minority groups try to receive basic help or care and are met with unnecessary challenges, this can lead to what is called minority stress. It is often harder for the LGBTQ+ communities to receive treatment for seizures and epilepsy. Stress factors include:
- Lack of safety
- Other problems with mental/physical health
- Judgment from healthcare providers
Faced with all these additional issues, members of the LGBTQ+ community may opt to not get care and are unable to receive the care they need for their epilepsy.
Gender-Affirming Care and Anti-Seizure Medication
Some people who identify as transgender and have epilepsy may elect to pursue gender-affirming healthcare. This involves hormonal and other treatments to match a person’s physical/physiological sex characteristics with their identified gender. It is important to work closely with your healthcare team before starting gender-affirming treatment to learn how hormone therapy may affect your seizure control. Many anti-seizure medications have potential interactions with gender-affirming treatments, so changes may be necessary. Keeping track of seizure frequency, triggers, and having a seizure action plan can help you stay well while undergoing therapy.
Learn More:LGBTQ+ Community and Epilepsy
Pride Month and Sharing Your Story
Although everyone in the epilepsy community is strong and worthy of celebration every day, we honor the LGBTQ+ members of our community every year in June. When we celebrate Pride Month, we commemorate the strength and contributions members of the LGBTQ+ community have made across the world. We encourage you to share your epilepsy story and prioritize your well-being during Pride Month and every month of the year.
Resources for the LGBTQ+ Community
When looking for epilepsy care, finding the right healthcare team can be difficult. Particularly a team who is accepting and welcoming of sexual and gender minorities, which may be a challenge. There are resources available online to find a provider who offers a safe space for anyone to get the care they deserve. One resource includes the LGBTQ+ Healthcare Directory. Additionally, you can find a provider via a web search, alliances, previous work with community LGBTQ+ organizations, and word-of-mouth.
The Trans Lifeline provides transgender peer support for the transgender community and connects people to community support and resources. They provide a hotline that operates 24/7.
It is also important for all members of the LGBTQ+ community to know what to ask, how to ask it, and what information to provide healthcare providers so they receive the care they deserve. Good resources for this information can be found on GLMA’s website.
We also urge everyone to reach out for help, especially if they have questions or do not feel safe. The Epilepsy Foundation offers a free, confidential Epilepsy & Seizures Helpline available 24-hours a day, 7-days a week, in English (1.800.332.1000) and Spanish (1.866.748.8008). In addition, the Epilepsy Foundation’s eJourney blog provides a safe place where LGBTQ+ people can share their epilepsy journey.
If you are an LGBTQ+ youth and you feel you are having trouble overcoming challenges or you are having thoughts of self-harm, it is very important to get immediate support. There are many free programs from organizations like the The Trevor Project where you can connect to a crisis counselor 24/7 in a confidential manner.
Sasha Alick-Lindstrom, MD FAAN FACNS FAES
The Epilepsy Foundation is dedicated to patient-centric, physician-directed care. Our epilepsy community is made up of individuals of varying gender and sexual orientations, nationalities, ethnic and racial backgrounds, ages, socioeconomic status, and spiritual and cultural norms. All people differ in the way they are diagnosed, the type of seizures they have and how their seizures are treated. Each of these communities experience epilepsy differently, including having varying degrees of accessibility to specialized epilepsy care. The Foundation is committed to serving each person with epilepsy as they come to us. We do not elevate or discriminate any group because all humans are worthy of care. We see everyone as a unique person and provide assistance and support to anyone who comes to us. Doing otherwise would put our mission and our community at risk. Our utmost goal is the care, dignity, and welfare of everyone living with epilepsy. To do otherwise would jeopardize our commitment to our mission.
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