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.
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Search interest for Infantile spasms grew by 35% in the last 3 months, from May 2022 to July 2022.
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Infantile spasms, also known as West Syndrome, are a type of seizure that occurs in babies in a series of short spasms over a short period of time. These spasms look like a sudden stiffening of muscles, and the bending of the baby’s arms, legs and head.
Even though it is a rare disorder (1.6-4.5 per 10,000 births), parents worry about infantile spasms as they can lead to developmental delays, intellectual disability and lifelong epilepsy.
Vaccinations (MMR, MMRV, DPT) have been known to trigger the earlier onset of infantile spasms. When the COVID vaccines were authorized for children over 6 months in June, parents may have started looking into potential side effects, leading to the increased interest observed.
Myoclonic seizure involves sudden, involuntary jerking and twitching in muscles or muscle groups, without changes in awareness and consciousness. It is the result of an underlying epileptic condition in the brain.
Although myoclonic seizures and epilepsy share similar symptoms, they are different - myoclonic seizures don’t usually pose a serious health threat.
People are specifically searching for videos on different types of seizures. This may mean that people are looking to self-diagnose seizures observed in themselves or loved ones. With the high stakes involved in a misdiagnosis, it’s important that HCPs and drug companies play a more active role in providing guidance to these searchers.
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Search interest for Myoclonic Seizure grew by 9% in the past 3 months, from May 2022 to July 2022
Search interest for Deep Brain Stimulation for epilepsy grew by 34% in the last 3 months, from May 2022 to July 2022.
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Deep brain stimulation is a neurosurgical procedure that involves an implanted device that delivers an electrical current directly to areas of the brain, and is commonly used to treat neurological disorders like Parkinson's disease or epilepsy.
Search interest in this treatment has surged in the last quarter, especially among older people. Searches specifically center on the cost, associated diseases and potential risks of deep brain stimulation.
The increased interest in deep brain stimulation may be due in part to the high prevalence of neurological diseases among the elderly, coupled with the growing older population.
Diazepam is drug that acts as an anxiolytic (drug used to relieve anxiety), and is primarily used to treat conditions like anxiety and alcohol withdrawal symptoms. Importantly, it is also used to treat seizures and muscle spasms.
General searches for diazepam rose slightly in the past three months, with higher increases in specific queries around drug dosage, side effects and interactions with other drugs.
There is increasing interest in the effects of taking diazepam alongside cannabis, likely an effect of the growing legalization of cannabis in the United States. While some of these searches may be driven by the use of both cannabis and diazepam as street drugs, others might be driven by the use of both in alleviating seizures among people with epilepsy and other similar conditions.
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Search interest for Diazepam grew by 6% in the past 3 months, from May 2022 to July 2022.
Search interest for service dogs for epilepsy grew by 14% in the last 3 months, from May 2022 to July 2022.
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A seizure alert dog is trained to respond to a seizure in someone who has epilepsy. Such dogs are trained by approved training providers. Owners are allowed by law to bring them into certain public spaces that usually disallow pets.
Many patients with these service dogs have reported an improvement in their quality of life, because of both the companionship the dogs offer, and their therapeutic qualities.
There is a lot of buzz about service dogs among those with epilepsy, with many searching for information on cost and training centers. Because there is no decisive research yet on what makes a service dog more or less effective, interested parties often depend on online conversations, indicating an opportunity for HCPs and drug brands to contribute positively to the discourse.
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.
Besides spasms and seizures, epilepsy comes with many lifestyle and mental health challenges – challenges that are often left unspoken. Several TikTokers have been active in shedding light on these “dark sides” as an effort to raise empathy for those with the condition.
Challenges related to epilepsy include feelings of being trapped, isolation, depression, and even medical gaslighting from doctors. Videos talking about these challenges have provoked strong emotion from viewers, and have encouraged even more epileptics to share their stories in the comments section.
HCPs and drug brands can amplify this important conversation across major social media platforms.
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As the Internet grows in importance as a source for both information and community, more and more people with epilepsy are sharing videos of their seizures, esp. on TikTok, both to seek help with their symptoms and to educate others about their condition.
These TikTokers – dubbed “epilepsy warriors” by some commenters – are lauded by viewers for their courage and fortitude in the face of a challenging illness.
These videos are valuable as a way of demystifying epilepsy, and driving better empathy for people with the condition.
Although online conversations about epilepsy are dominated by patients, there is a growing number of HCPs who embrace the potential of social platforms to reach, engage and help people with the condition.
These HCPs offer more reliable and accurate medical information on the diagnosis and management of epilepsy. They dispel misconceptions – esp. those that emerge and grow on social media – and give recommendations on helpful products or digital applications.
The Internet is here to stay as a source of medical information for the general public, so it’s critical that HCPs join the discourse to correct and guide the conversation.
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Instagram is popular among people with epilepsy as a platform for celebrating their victories with the condition. The vibe is generally more positive than on other platforms.
Instagram content on epilepsy includes many stories of people’s long journeys with the condition, from diagnosis to struggles to treatment to new seizure-free lives. Along the way, these people often also talk about the products and services that have helped them.
These stories are a powerful way to reach and inspire people living with epilepsy, and can be an effective channel for word-of-mouth marketing.
Social media users and survivors have adopted the hashtag #epilepsyawareness, and donned the purple ribbon to raise awareness of the condition. The purple ribbon is inspired by lavender, which has been internationally recognised as the flower of epilepsy; traditionally, it symbolises isolation and loneliness, emotions commonly associated with epilepsy.
Symbols like the purple ribbon are powerful because they drive awareness, empathy and a sense of community among people with epilepsy. Symbols like this can be used – with care – to drive more engagement with the epilepsy community.
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