Breaking the Stigma: Improving Epilepsy Awareness and Care

Emma Macdonald-Laurs, PhD, FRACP, MBChB

Purple Day^®, observed on March 26th, is an international initiative aimed at raising awareness for epilepsy, a neurological condition affecting millions worldwide. Founded in 2008 by Cassidy Megan, a young girl from Canada, Purple Day has grown into a global movement, encouraging people to wear purple and share information about epilepsy. The day serves to educate the public, reduce stigma, and advocate for the needs of those living with the condition.

Raising awareness is essential to improving understanding and support for people with epilepsy. Despite its prevalence, epilepsy is often misunderstood, with misconceptions about its severity and daily impact. Initiatives like Purple Day help correct these misunderstandings, offering resources and promoting better care. The campaign emphasizes the importance of early diagnosis, effective treatments, and improving the quality of life for those affected by epilepsy.

To continue awareness efforts in honor of Purple Day, NeurologyLive® sat down with Emma Macdonald-Laurs, PhD, FRACP, MBChB, a pediatric neurologist and epileptologist at the Royal Children’s Hospital, in Melbourne, Australia. In the discussion, Macdonald-Laurs discussed the misconceptions surrounding epilepsy, the importance of reducing stigma, and the critical need for better mental health support for those affected. Macdonald-Laurs also touched on the challenges of diagnosing and treating epilepsy in children, as well as the importance of integrating advanced technologies like EEG and neuroimaging to improve patient care.

***Purple Day is owned by The Anika Kaufmann Foundation and is used under license from The Anika Kaufmann Foundation***

NeurologyLive: How have we raised the awareness of epilepsy from a general public standpoint?

Emma MacDonald-Laurs, PhD, FRACP, MBChB: I think we’ve raised awareness due to increased work from both non-governmental and governmental organizations, but also from the patients themselves. I’ve got quite a few patients who have headed up advocacy groups, and a lot of these groups, even some of the larger ones, have started from a patient’s story. I think this has been a really effective way to improve the understanding of epilepsy, reduce some of the stigma associated with having seizures, and also disseminate more information about ways that people can gain support for epilepsy. This includes practical support, like epilepsy management plans or emergency support, as well as support for coping with the diagnosis.

What parts of epilepsy are still misconstrued by the public?

A lot of the general public misconstrue epilepsy as always being a severe diagnosis associated with significant neurological disability. But at the same time, there’s also a perception that people with seizures are fine and that it’s a silent disability. People often run up against patients saying, "Oh, I’m expected to still do this test for school after having a very large seizure last night." So, I think a lot of the time, the general public still doesn’t fully understand the impact epilepsy can have on mental abilities. There’s also the fear of, When is my child or relative going to have another seizure? What’s going to happen? Will we need to go to the hospital? And the financial implications of having a diagnosis where there’s a recurrent, severe, and unpredictable event. So, I think the general public may see the disease as always being more severe than it is, but at the same time, they don’t always understand the day-to-day impact of epilepsy for those who live with it.

When you talk to families, what are the most important questions that patients ask you, and how do you typically respond?

As a pediatric neurologist, one of the most common questions I get asked is, Is my child going to be okay? Will they be seizure-free? I do work with a lot of patients who have drug-resistant epilepsy, so that might not always be a possibility. But I tell parents that we are here to support them, and we will never give up trying to find a medicine, device, or even epilepsy surgery that might help their child. It may be a long journey, but we are here to support them, along with our wider team and advocacy groups. That’s the most common thing I get asked, especially at diagnosis.

On the research front, where do efforts need to be directed?

I think one important area of research is the implementation of some of the research we already have. There’s a lot of good research on the use of artificial intelligence for diagnosis within EEG or neuroimaging, but it’s not yet widely used in clinical settings. So there’s a gap between research and its clinical implementation, as well as an understanding of the acceptability of these methods for patients and their families. Another area that needs more focus is research into improving the mental health of people with epilepsy. We need to continue to understand that better and figure out how to better prioritize mental health within the healthcare system we work in.

As a clinical community, how can we continue to help care for the neurodevelopmental challenges children with epilepsy face?

I do think there’s been a good shift in focus from solely concentrating on epilepsy and seizures to also improving our understanding of the comorbidities these patients may face, such as developmental and mental health challenges. There’s now more focus on asking patients questions about these comorbidities or performing early diagnoses for conditions like autism or ADHD when they might be present. However, I still think there’s a gap in this area. In my healthcare setting, for instance, we don’t always have the resources to make these diagnoses quickly. I think this is an area that governments could focus on improving for patients, because often, these comorbidities are more of a challenge for patients than the actual epilepsy itself.

How can we continue to advance imaging and EEG, considering the valuable and critical role they play in patients with epilepsy?

I think for EEG technology, we need to continue making it more accessible for patients. In the past five years, there has been an increase in the availability of ambulatory EEGs, or EEGs that can be done at home or even at school. This is really important because it means patients don’t have to take time out of their week to spend a week in the hospital for an EEG, especially when they might not even have seizures outside of their normal day-to-day life setting. I also think there should be more focus on integrating technologies, and that’s where some of my research comes in. How can we integrate EEG with other neuro technologies like neuroimaging to pinpoint the seizure focus in people with local epilepsies? On the imaging side, how can we continue to improve our imaging acquisitions and ensure that all our patients get a proper epilepsy protocol MRI, not just a normal MRI to exclude large brain pathologies? It’s really critical that we get a high-quality MRI early on in the diagnosis, because that can be a game-changer. Knowing the diagnosis helps us provide the right treatments, and sometimes even a cure, through epilepsy surgery or local targeted therapies.

Transcript edited for clarity.