Meet Kierstin

Looking ahead

If you happened to see Kierstin with a group of her friends, you might never suspect that she was anything but a typical 15-year-old girl. But Kierstin has been living with a rare disorder—tuberous sclerosis complex (TSC)—since she was an infant. And over the years, it has shaped every aspect of her family’s life.

“When Kierstin’s seizures were bad, the whole family was on pins and needles. None of us could do our normal activities.”

The first signs of Kierstin's condition were discovered during a routine ultrasound when her mother, Amy, was still pregnant. The normally chatty technician suddenly fell silent and after a long while, a doctor was called into the room. Amy could overhear from the hushed conversation that multiple tumors had been found on her baby's heart.

Kierstin was diagnosed with TSC just 7 days after she was born. The seizures started soon after, and they didn't stop. At the age of 2, Kierstin underwent brain surgery, which was successful and helped for a time—but the seizures came back with a vengeance as Kierstin was approaching her teen years. Frequent seizures and hospitalizations affected her school, her activities, and so much more. It got to the point where they faced a choice: another brain surgery, or a medicine called EPIDIOLEX. They chose EPIDIOLEX.

As Kierstin's doctor gradually increased the dose of EPIDIOLEX, the seizures became fewer and further between, and her family saw the change in her. This school year has been different. With fewer seizures, Kierstin had more freedom to learn and do the things she loves—like soccer and playing the piano—with fewer disruptions and less fear that her seizures would hold her back. Her family feels a sense of relief. And Kierstin herself looks to her future with hope: she loves computers, and sees herself working with animals one day. Living with TSC has been a long road, but she’s excited to see where EPIDIOLEX could take her.