The TSC Alliance supports people with tuberous sclerosis complex (TSC) who are LGBTQIA+; therefore, the unique and unfortunate challenges experienced in this community are just as important to address as all other barriers and challenges along this journey. Many will face the triple discrimination of living with a genetic disorder, coping with a TSC-associated neuropsychiatric manifestation and grappling with gender identity all greatly impact the level of stress, social stigma and discrimination compared to cisgender peers with TSC. It is essential to reinforce that identifying as LGBTQIA+ is not a mental health illness.
Sadly, many LGBTQIA+ individuals experience significant disproportionate mental health struggles including suicide. We acknowledge that exclusion, access to care and lack of safety create additional barriers to your overall health and wellbeing. In addition to the above recommendations for self-care surrounding mental health, make sure you have the right healthcare team to not only address your TSC needs but your personal and physical well-being too.
The GLMA Provider Directory is the recommended resource to locate a LGBTQI+ friendly provider to help manage your overall healthcare needs. Your safety and the ability to feel comfortable sharing your identity with family and friends can be difficult, which is why we recommend The Epilepsy Foundation’s Epilepsy & Seizure Helpline in English (1-800-332-1000) and Spanish (1-866-748-8008), which is a free, confidential helpline available 24 hours, 7 days a week. Additional mental health resources for LGBTQIA+ individuals are available in our navigation guides below. We also encourage you to contact one of our TSC Navigators if you have any questions or concerns about navigating your journey.