Receiving an epilepsy diagnosis can come as a “tremendous shock,” leaving patients and families with questions about what caused it, what happens next and how it could affect everyday life.
Simply getting to the diagnosis takes time for some patients. A first seizure may be mistaken for fainting, stress or something else, and even after epilepsy is diagnosed, its exact cause may not be clear.
This opens up a well of questions: how will epilepsy affect school, work, driving, relationships or independence? What happens when a child with epilepsy becomes a teenager and eventually moves into adult care? And how can researchers build stronger relationships with the communities they hope to involve in research?
In an exclusive interview, Xtalks spoke with Valeria Palladino, Chief Operating Officer of the Epilepsy Association of Edmonton and Northern Alberta (EAENA), about the gaps surrounding medical care, the role of community connection and why trust with patients and families needs to be built long before a clinical study begins.
Filling the Space Around Medical Care
While a diagnosis and subsequent medication can address important parts of epilepsy care, they may leave other nuances about living with the condition unanswered.
People may need guidance around school, employment, driving, relationships, mental health, safety, sleep and physical activity. The wait for specialist care is often long. When an appointment finally arrives, patients and families may have limited time to ask questions.
“When you're frightened and you're overwhelmed, you don't necessarily know what questions you should be asking,” Valeria said.
EAENA sees a functional role for community organizations.
“We don't replace medical care, absolutely not, but we help fill the space around it,” Valeria emphasized. “We provide education, practical support, connections with others who understand and reassurance that a diagnosis of epilepsy doesn't really mean you have to give up on having a full and meaningful life.”
This support allows people to work through the parts of epilepsy that happen outside a medical appointment and gives families somewhere to turn as their questions change.
Navigating Growth, School and Peer Connection
Parents may initially wonder how seizures will affect development, learning or memory, whether medications will cause side effects and whether teachers know what to do during a seizure.
Valeria shared a question that comes up often: will my child eventually grow out of seizures?
As children become teenagers, they start thinking about independence and fitting in with friends, and eventually about moving from pediatric into adult healthcare.
“Children don't want to be singled out at school. They don't want friends to be afraid of them. They don't want epilepsy to be the very first thing that anybody gets to know about them,” Valeria said.
Many fear being defined by epilepsy, and this is why EAENA places such an emphasis on community connection. A family newly dealing with epilepsy can speak with another family that has already faced some of the same questions.
“Sometimes a young person simply needs to meet someone else who has epilepsy and to realize, ‘Oh, I'm not the only one. This isn't just happening to me,’” Valeria said.
Epilepsy Is Not “Just Seizures”
One of the most persistent misconceptions Valeria encounters is that epilepsy is only about seizures.
“What we hear the most and what I personally believe is the biggest misconception is that epilepsy is just about having seizures. It really isn't. It affects every part of a person's life,” she said.
It can be an invisible disability. Valeria shared that some people worry about being judged, treated differently or viewed as less capable. This may lead them to hide their condition or withdraw from social situations.
Epilepsy management also involves medication side effects, memory or concentration difficulties and practical planning at school. Children may need staff who understand seizure first aid, access to prescribed rescue medication and educational accommodations that allow them to participate alongside their classmates.
Then there is the unpredictability.
“Even when somebody is doing everything right, there is still that question in the back of their mind: When will the next seizure happen?” Valeria said.
Building Research Relationships Before Recruitment Begins
Valeria wants researchers and life sciences companies to connect with epilepsy communities before a study begins.
Early engagement can help researchers understand patients’ everyday experiences and ask more relevant research questions.
“I think one of the most important things researchers, life science companies can understand is that meaningful research starts with meaningful long-term relationships with the epilepsy community,” she said.
“You cannot buy trust,” Valeria said. “You can have all the facts in the world to convince somebody. If they don't trust you, they're not going to engage with you.”
There is a difference between one person raising a concern about access to lamotrigine and hundreds or thousands of people raising the same issue through a community organization. These organizations carry weight, as they bring individual concerns together.
“If you walk along those communities, you learn where they come from, and then your research questions become more meaningful,” Valeria said.
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