At the Epilepsy Agency of the Big Bend, we are honored to share the stories of individuals in our community who have faced and overcome the challenges of epilepsy. These “Stories of Hope” highlight the strength, resilience, and determination of those who have turned their struggles into triumphs, often with the support of our agency and each other. We are deeply grateful to those who have trusted us with their personal journeys, and we hope these stories will inspire others to embrace their own path forward. Together, we are creating a future where epilepsy no longer defines a person’s potential.
Parenthood is a multifaceted role filled with countless responsibilities and obligations. For single parents, these challenges are exacerbated by the need to coordinate schedules, manage finances, and cope with limited support. For Angela Johnson, a single mother of three, these hurdles were magnified by a chronic illness—epilepsy.
At the Epilepsy Agency of the Big Bend (EABB), many people seeking help reside in marginalized communities without access to routine healthcare. Angela approached EABB in 2016 after being without health insurance for over a decade, leading to daily tonic-clonic seizures, frequent emergency room visits, and a constant sense of despair.
Angela was diagnosed with epilepsy in 1999, at the age of 23, when she started experiencing seizures during pregnancy. In 2006, her seizures became more frequent. Fortunately, surgery was an option because she was temporarily covered by health insurance. Though the procedure led to several months of being seizure-free, the episodes returned. Shortly after, Angela lost her health insurance, leading to a decade of difficulties.
Her constant seizures made employment out of reach and limited her transportation options. Determined to improve her life and pursue higher education, Angela knew that gaining control of her health was crucial—as was being able to care for her children.
EABB provided Angela with a pathway to manage epilepsy by offering financial assistance for neurology care and medication. The organization also provided transportation assistance to ensure she could attend her medical appointments. Eventually, Angela and her care team found a combination of medications that enabled her to be seizure-free within a year. “My health has really improved with the medicine—and my kids are so much happier.” she said.
Support offered by EABB has been pivotal for Angela, providing a sense of community, belonging, and a place to share experiences with others living with epilepsy. These encounters have helped her learn coping strategies and have improved her self-confidence.
In 2017, nearly a year after seeking assistance and becoming seizure-free, Angela expressed interest in obtaining a driver’s license. However, her doctor advised an additional waiting period. EABB continued to support Angela by easing her financial and transportation burdens as she completed her undergraduate degree at Florida State University.
After enduring daily seizures for ten years, Angela finally gained long-term control of her condition, allowing her to better care for her children and pursue higher education. She obtained an undergraduate degree in 2019 and is currently a Ph.D. candidate in Environmental Science at the age of 48. Without the help of EABB, individuals like Angela would continue to struggle with a disabling condition.
EABB is a comprehensive resource hub, providing emotional and social support for individuals with epilepsy and their caregivers. The organization offers epilepsy education, financial support for those without adequate health insurance, coordination of services and navigation to healthcare providers for timely appointments and prescription refills. EABB also emphasizes self-management practices, helping individuals and their caregivers develop the skills and confidence needed to manage the condition effectively.
Angela Johnson is just one example of the hundreds of individuals EABB assists and guides toward seizure freedom and a better quality of life.
Living in rural communities presents unique challenges for individuals, especially those managing chronic health conditions like epilepsy. Limited access to primary and specialty healthcare, scarce medical facilities, and long travel distances to the nearest hospitals compound these difficulties. For many, emergency room care becomes the only option. Additionally, the lack of health insurance among rural residents further complicates access to timely and adequate care. These barriers often lead to delayed diagnoses and inconsistent treatment, significantly diminishing the quality of life for those living in underserved areas.
Daniel’s Journey
Daniel, a 34-year-old devoted husband and father of two young children, has battled epilepsy since infancy. Living in a remote rural area without health insurance made accessing the care he needed to prevent debilitating and recurring seizures nearly impossible.
In 2016, Daniel discovered the Epilepsy Agency of the Big Bend (EABB). Responding to his urgent request for help, our care managers developed a personalized plan tailored to his needs. A neurological exam was scheduled immediately, followed by diagnostic tests to determine the most effective treatment for his specific type of epilepsy. EABB not only covered the cost of Daniel’s medications but also his neurology visits, diagnostic testing, and transportation to and from appointments. These comprehensive services have been provided entirely free of charge.
For Daniel and his family, this financial relief has been transformative. Living within limited means, they no longer have to fear the overwhelming burden of medical expenses. Instead of choosing between paying for epilepsy care or meeting daily needs, Daniel and his wife can focus on providing stability and opportunities for their children. Beyond peace of mind, this ongoing support has enabled them to prioritize essentials and invest in their children’s future—creating a brighter and more secure path forward.
Our commitment to Daniel isn’t temporary. As long as he and his family need us, EABB will remain by their side, providing financial assistance, medical care, and guidance. This unwavering support ensures Daniel can sustain his progress, confident that he has a reliable partner every step of the way.
Over the past eight years, EABB has been a steady source of encouragement and care for Daniel and his family. With consistent check-ins from our care managers, Daniel’s seizures have become infrequent, and he has learned practical strategies to manage the occasional episodes. This newfound stability has allowed Daniel to focus on what matters most: providing for his family. Watching Daniel and his family thrive has been incredibly rewarding. Today, he feels hopeful and empowered, knowing his health is no longer a barrier to fulfilling his responsibilities as a husband and father.
Extending Support Beyond Medical Care
EABB’s assistance extends beyond medical treatment. We educated Daniel’s wife, Evelyn, on how to respond during a seizure, keep him safe and comfort their children when these episodes occur. This guidance has strengthened the family’s ability to cope with epilepsy, fostering resilience and confidence.
A Broader Impact
Daniel’s story is one of many. EABB supports over 250 individuals and families across 14 of North Florida’s most impoverished communities, each facing unique challenges in a healthcare system riddled with systemic gaps. As these community needs grow, EABB remains a vital resource, providing sustainable solutions that improve the quality of life for individuals and families who have nowhere else to turn.
Through personalized care, ongoing education, and unwavering support, EABB continues to empower those living with epilepsy, ensuring that health challenges don’t define their futures.
For most of her life Louise, who is now age 47, has lived with her parents in Central Florida. She was diagnosed with autism at age 14, and six months later she was diagnosed with epilepsy. Her mother took the lead as her care provider, and they faced living with these challenges hand-in-hand. When her mother passed away in 2016, she struggled living alone with her father. Louise described their relationship as detached and colored by the stigma of her conditions. His involvement in her life was always limited. “He never accepted my disabilities and lets me know how he feels about me all the time,” she said. “I feel so alone, really trying to cope by myself”.
Planning to relocate to North Florida, Louise contacted the Epilepsy Agency of the Big Bend (EABB) in the Fall of 2019. Her father’s health was deteriorating, and they both needed the extra support from an older sister who resides in Bay County. Louise was overwhelmed by everything involved in planning the move and was experiencing symptoms of trauma, fearful about making such big life changes. EABB helped her remotely throughout the transition, offering comfort, helping her to make decisions and to avoid situations that might trigger seizures. Before she arrived, she said, “I feel I have a friend in Bay County already.”
EABB endeavors to recognize and applaud the unique talents within each person we serve, striving to empower individuals, like Louise, to take an active role in improving their quality of life. From her initial contact until she arrived in Panama City several months later, EABB reminded Louise that “we are on your side”.
Louise still grieves the loss of her mother but has replaced that comforting sense of “belonging” with the EABB community. She continues to live with her father and has now become his caregiver, finding the courage and the ability to help him cope with the late stages of congestive heart failure.
EABB connected Louise with a primary care provider in Bay County. We provided epilepsy education and tools to help her manage her condition. We’ve coordinated and sponsored her neurological care and medication, and connected her with grief counselling and disability resources. Louise has since gained a significantly deeper insight into epilepsy, safety and seizure management. Among other things, she’s learned that stress or menstruation can be triggers. She’s developed a Seizure Action Plan and now keeps a Seizure Diary.
She’s told us her involvement with EABB has been instrumental in a number of personal achievements. She graduated from a local state college culinary program. She has become an enthusiastic disability rights advocate, and is an officer of the Florida Self-Advocates Network (FL SAND). She competes in the Special Olympics, having won second place in the basketball tournament, and first place in the cycling event, this year.
For the first time in her life, she has a job. She works part-time at Winn Dixie and was given an award for assisting a customer who had a seizure. She attributes her improved well-being and growing self-confidence to the EABB team, saying, “I don’t know where I would be without you.” She is an inspiration to us all.
The International League Against Epilepsy supports a powerful project where adults, children and caregivers express their difficult journeys through artwork. These poignant stories from around the world illustrate the importance of increasing visibility and fostering shared understanding.