After being diagnosed with epilepsy as an infant, Anna Galvin, a senior at Marysville Charter Academy for the Arts, was later diagnosed with tuberous sclerosis as a young child. The rare genetic disease causes cortical tubers to grow in the brain and several other areas of the body, including the lungs, heart, kidneys and skin.
These benign lesions can lead to a number of physical and neurological conditions such as epilepsy, autism, strokes and diabetes. According to Galvin, an estimated one in every 6,000 births is affected by tuberous sclerosis.
Galvin dealt with mild seizures throughout her childhood, and later experienced both atonic and grand mal seizures, which involves a loss of consciousness and muscle strength and leads to violent muscle contractions.
“Before, I could play piano, I could do math without a problem, but then when these fall-down seizures happened, I wasn’t able to do anything without worrying about getting an injury,” Galvin said.
In 2016, she said that a friend of her family helped fly her out of Oregon House to the Cleveland Clinic in Ohio. After undergoing a series of tests, her doctors were able to find a medication that kept her seizures under control. Galvin has now gone six years without experiencing a seizure, but living with tuberous sclerosis has driven her to seek out others with her condition and advocate for more awareness of the disease.
In August 2022, Galvin applied to become a future leader with the Tuberous Sclerosis Complex (TSC) Alliance, an internationally recognized nonprofit that works to advance research for the disease and improve the lives of those living with tuberous sclerosis.
Between Feb. 27 and March 3, Galvin and others aligned with the TSC Alliance visited Washington, D.C., to march for more awareness and research about their condition, attend volunteer leadership and advocacy meetings and meet with congressional representatives.
During her first day, she attended training sessions to prepare for her meetings with government officials and better understand the scope of disease research in need of funding.
“They explained what the money goes to for the research, like where they’re focusing. They explained how to approach speaking with staff and congressmen for the following day, and we got to meet other people with the condition or representing family members,” Galvin said.
As a representative of California for the TSC Alliance, Galvin was paired with two others who represented family members with tuberous sclerosis. Together, they were able to meet with a number of government officials to share their stories and how their lives have been impacted by the disease.
“For me, I was super lucky. I was able to get my seizures under control, and now because of the research that’s being done, I am able to take medication to stop further problems like the cortical tubers in my brain,” Galvin said.
Among some of the officials she spoke with were Congressmen Jimmy Panetta and Kevin Kiley.
“I was able to put Oregon House on the Third Congressional District of California map. Now that’s on (Kiley’s) map, and I’m so happy to be a constituent and meet the congressman for this district,” Glavin said.
She was also able to meet with staff members representing Congresswoman Doris Matsui and Senators Diane Feinstein and Alex Padilla. Having the opportunity to talk about her experience with tuberous sclerosis with government officials was both intimidating and inspiring, she said.
“This day was super eye-opening to me because they’re just people. Online, you kind of get scared or frightened or at least intimated by these high figures, but when you see them, they’re just people doing their job. It was super inspiring and I was happy to have this experience,” she said.
As a future leader for the Alliance, Galvin has been able to meet with other people living with tuberous sclerosis to platform more resources and information about both the disease and the Alliance. Galvin is fluent in Russian and attributes this to her being able to connect with people living with their condition on an international level.
“I asked if I could reach out to Russian communities or Russian-speaking people in general. I thought maybe they’d want to share their stories with me or speak with someone who understands their language or their more comfortable language,” she said.
Galvin plans to record a video detailing her experience with tuberous sclerosis in Russian through the TSC Alliance in hopes of spreading awareness through Russian-speaking communities. She also hopes to connect with others in the Yuba-Sutter community who may be living with her condition as well.
“Young adult voices deserve to be heard. … I’m super happy that I was able to take advantage of what was thrown at me, and I hope to share my story even further,” Galvin said.
