Brett Schuilwerve had his first seizure during the night at age 30 while living in Texas. The seizure was a by-product of a tumor, called Oligodendroglioma, that sits on Brett’s frontal lobe. Brett remembers waking up flustered and confused, wondering if he had actually experienced the seizure. After seeing a neurologist and undergoing an EEG and other tests, it was confirmed that he did, in fact, have a seizure. Brett was prescribed Vimpat – a medication he physically tolerated well; however, due to financial concerns, it was hard for him to afford.
Later on, while Brett was attending college to complete his criminal justice degree, he became a client of the Epilepsy Foundation of Texas. He became a client to manage his epilepsy diagnosis due to not having insurance while attending college. He also wanted to connect to support groups and learn about coping mechanisms.
Brett’s brain tumor continued to trigger grand mal seizures. As a result, Brett moved from Texas to the Jacksonville area of Florida to be closer to his family. As a former client of the Epilepsy Foundation of Texas, Brett was aware of Epilepsy Alliance Florida. The challenges of navigating the Medicaid landscape in Florida presented new challenges for Brett in receiving care for his epilepsy and brain tumor. In January 2024, Brett had an appeal to see if he would be able to receive Medicaid.
Brett said the intake process with Epilepsy Alliance Florida went well. He was a self-referral since he was already familiar with the organization and he reached out himself to get connected.
“Ms. Jada, my case manager, has been an absolute miracle in connecting me with some of the local neurologists in the Fernandina Beach area to help mitigate some of the hurdles I’m facing,” said Brett. “I’m slated to participate in a variety of Zoom sessions with the Gainesville office soon and these will allow me to connect with others and learn strategies to deal with epilepsy.”
Brett has since attended a Gainesville support group and is interested in attending more local in-person and virtual support groups in the future. His goal is to continue going to support groups and staying connected to others with epilepsy and learning about resources in the community. Brett has been invited to the Jacksonville Walk the Talk and other future events, like the Lunch and Learn in Jacksonville.
One of the main services used by Brett at Epilepsy Alliance Florida is its emergency medication refill service. “Due to the socioeconomic and health challenges I face, I often struggle at navigating the healthcare landscape,” said Brett. “Epilepsy Alliance Florida mitigates the stressors that accompany these challenges by having a case manager helping me in securing services.”
Brett said Epilepsy Alliance Florida has helped minimize his stress and resulting seizures. “Stress is the major precursor for me having a seizure,” said Brett. “Being an Epilepsy Alliance Florida client has tremendously reduced the amount of stress I have tied to my finances and health.”
“Having experiences with the Epilepsy Foundation of Texas and Epilepsy Alliance Florida, I am a firm believer and supporter of the services they provide,” continued Brett. “Though I’ll face the same challenges dealing with my tumor and the grand mal seizures I’ve experienced, being a client with Epilepsy Alliance Florida will continue to be a major source of positivity in my life. I’m very grateful for its services. As such, I will continue to be an active client for the foreseeable future.”
Brett would like to share a message for others living with epilepsy: to keep going and learn to lean on others. In his own words, “Put one foot in front of the other and keep on, keepin’ on. It gets better.”
