About 3.4 million Americans have the neurological condition of epilepsy, which translates to approximately 1 in 12 people. In addition, it is thought that 1 in 26 people will develop epilepsy in their lifetime.
Epilepsy is characterized by brain seizures, loss of awareness, and behavior changes. It is known to impact patients’ lives in significant ways, as the condition and treatments can impact daily functioning.
How are people with epilepsy sharing their frustrations and triumphs through online communities?
The Trends Section provides an overview of some of the most recent and relevant topics that relate to particular health conditions.
It features a selection of the topics that have the fastest growing Google search interest across the last three months, and reflects the inquiries of patients, healthcare providers, scientists, and others who are invested in the topic.
This is valuable to understand people’s interests and concerns at the present moment, and often include the U.S. states that have the highest interest in a topic.
Quilt.AI brings these trends to life through an analysis that incorporates both cultural and scientific lenses.
Search interest for epilepsy pregnancy grew by 1488% in the last 3 months, from August 2022 to October 2022.
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The study conducted by the American Academy of Neurology has revealed that women with epilepsy are more likely to experience depression and anxiety symptoms during pregnancy and postpartum compared to women without epilepsy [1] . This publication resulted in a significant increase in search interest for the topic.
The study emphasized the need for mental health screening and the use of antidepressants during pregnancy and postpartum for women with epilepsy, to ensure that all mothers receive the necessary support and treatment during this critical period.
With conversations on mental health becoming more prevalent online, there is still much to be done on providing care for different groups, ranging from mothers to epileptic patients.
Searches for ‘Management of drug-resistant epilepsy’ has grown significantly over the past three months. The interest was sparked by EnlitenAI's partnership with UCHealth [1] for the management of epileptic seizures.
As EnlitenAI monitor and record patients' neurological indicators through wearables like wristwatches, and EEG headsets, it allows them to predict when a seizure is likely to happen and design a more targeted approach to manage it [2].
Using these technologies, physicians can more effectively predict and treat chronic conditions, greatly improving patient outcomes.
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Search interest for Management of drug-resistant epilepsy grew by 323% in the past 3 months, from August 2022 to October 2022
Search interest for treatment of status epilepticus for epilepsy grew by 79% in the last 3 months, from August 2022 to October 2022.
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Status Epilepticus describes a condition where people with epilepsy experience a seizure lasting longer than five minutes or a series of seizures.The search term "treatment of status epilepticus" has risen in the last quarter since FDA approved 10-mg Midazolam Autoinjector for the treatment of status epilepticus in adults [1].
The approval of Midazolam Autoinjector for Status Epilepticus, as the first auto-injectable product for treating seizures, has generated significant interest among patients and healthcare providers. The convenience and ease of use of an auto-injector may improve adherence to treatment and patient outcomes in the management of status epilepticus.
Empowering People’s Independence hosted a fitness challenge in October 2022, to benefit epilepsy programmes and services in New York [1]. The event received much attention from both the offline, and online community, and led to a surge in search interest towards epilepsy awareness in October.
Since one in 26 people in the US are likely to develop epilepsy in their lifetime, the prevalence of this condition means that such campaigns are crucial in educating the public, and providing support to patients living with epilepsy.
With November being National Epilepsy Awareness Month, as recognized by the Epilepsy Foundation, it is expected that the topic will gain even more traction within the country in the coming months.
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Search interest for epilepsy awareness grew by 271% in the past 3 months, from August 2022 to October 2022.
Search interest for neurostimulation grew by 70% in the last 3 months, from August 2022 to October 2022.
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Responsive neurostimulation therapy is becoming a popular alternative to traditional surgical methods for treating epilepsy [1].
This therapy, which has been approved by the FDA, has fewer side effects and is less invasive than traditional surgery, resulting in improved quality of life for patients.
As the use of neurostimulation in epilepsy care has started receiving more attention from the media, related search queries such as implantation, deep brain stimulation (DBS) and responsive neurostimulation (RNS) also increased online in recent months [2].
The Culture Section highlights emerging cultural trends, new products, and notable dialogue about a variety of health conditions. The purpose of this section is to zoom in on what has been happening within the cultural and professional landscape of a particular health condition–stories that are often missed by quantitative searches.
By featuring influential social media items, patient discourse, professional dialogue, product innovations, and impactful news items, this section illuminates the lived experiences of many patients, while also providing a snapshot of the developments happening around them.
Here, Quilt.AI offers a detailed and nuanced perspective of what is new and what is meaningful.
@epilepsy_memetherapy is an Instagram account with 5,652 followers that posts memes, videos, inspirational quotes relevant to the neurological disorder. Information on seizures, such as cause, and management are also shared in a humorous and light hearted manner on the channel. This format of dissemination has been popular amongst followers, since it accurately captures the daily frustrations and challenges faced by patients
@epilepsy_memetherapy and other similar accounts also post small victories and milestones in individual patient’s journey against the condition. Such channels have become invaluable to other patients who seek comfort and motivation in fighting their own battle against epilepsy.
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Studies have shown that calorie restriction reduces seizures in patients with epilepsy [1]. On TikTok, users have been recommending “keto diet” in particular, since it is known to provide high-fat, low-carbohydrate foods that reduce seizures in people with epilepsy. In addition, this is believed to be even more effective in children that are unable to get treated with the usual medications. #ketoforepilepsy has already received up to 200k views on the platform.
At the same time, patients have also been searching for Low-carb diets or Atkins diets, since they also help to reduce seizures, although not as effective compared to keto [2].
Catie Nielsen’s (@catienielsen) content, that feature her epileptic husband, has been receiving lots of attention on TikTok recently. Her posts unveiled the journey her husband went through - from getting diagnosed, to undergoing brain surgeries and experiencing trauma from the seizures, giving viewers an in depth perspective on the daily life of epilepsy patients and their loved ones.
Despite losing part of his memories to the condition, Catie’s husband still kept a positive outlook and lived everyday to his fullest. His perseverance and determination has resonated with others patients and viewers, gaining the couple 196.7K followers and 8.2M likes on their channel.
Such content can be a useful way for individuals with epilepsy to seek help and support online - though providing a sense of optimism and encouraging, from seeing others successfully manage their conditions.
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SUDEP Action Day was held on 19th October and used to commemorate the sudden, unexpected death of someone with epilepsy. On the day, patients and their loved ones use hashtags like #SUDEP, #sudepactionday2022, #epilepsyawareness, and #epilepsysupport to raise awareness, share personal stories and inspire action against the epilepsy. These include encouraging more research on cures and funding for the affected families.
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