Finding acceptance in epilepsy
Isabelle Siciliano

​​​​​​​​​​​​​We asked Isabelle Siciliano to sum up life with epilepsy. The phrase above her is how she feels, in her own words.

One of the main drawbacks of epilepsy is the stigma that comes with having the disorder​

In 2004, when Isabelle Siciliano was 13, she woke up in the middle of the night to a loud commotion and family members hovering over her bed. “I felt nauseous and very disoriented,” she recalls.​​

​She’d had a seizure. After a series of medical tests, Isabelle received a life-changing diagnosis: She had tuberous sclerosis, a genetic condition that causes mostly benign tumours inside the body.

Isabelle, now 27, had one tumour on her heart, which has since gone away, and still has them on her kidneys. She can still develop growths on her lungs, and she risks passing the condition on to future children. But most troubling of all is that tumours in her brain cause nerves to misfire, creating seizures.

​When someone has regular seizures like this, they’re considered to have epilepsy. Epilepsy can be caused by genetic factors, like in Isabelle’s case, or it can be caused by brain injury, cancer, stroke or other unknown reasons. While the other aspects of her original diagnosis worry her, it’s the epilepsy that impacts Isabelle’s life every day. She takes medication but can never drive. She goes to bed at 8 p.m., or risks the possibility of sleep deprivation causing more seizures. “Even stress itself can be a trigger,” says the Toronto-based theatre educator.

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