National Epilepsy Awareness Month (NEAM) is dedicated to raising awareness and understanding about epilepsy. This observance takes place annually in November and has been recognized since 1969 by the Epilepsy Foundation. The purpose of NEAM is to shed light on the challenges faced by the 3.4 million people and their families affected by epilepsy in the United States alone. Despite being one of the oldest known medical conditions, epilepsy continues to face significant public fear and misunderstanding, leading to discrimination, lack of funding for research, and premature deaths among people with epilepsy.
The Patient Perspective
Epilepsy is a neurological disorder characterized by recurrent seizures, which can manifest in various forms and severities. The condition affects mood, sleep patterns, cognitive functions, and social interactions, creating a complex array of challenges for those living with it.
Let’s listen to a 31- to 35-year-old woman with epilepsy describe what it is like to live with the condition:
Decoding the Patient Voice
Understanding the patient voice is at the heart of what we do at inVibe, which we approach holistically by analyzing what is said, how it’s said, and how it sounds.
To start, let’s jump into what this patient says and how she says it. When describing epilepsy’s impact, she highlights the fear she feels due to epilepsy’s unpredictability – you essentially never know when a seizure will happen (“can come on at any time without warning”).
In terms of how it sounds, we hear and see in the acoustics a dip in the acoustic control (‘dominance’) when she talks about the sudden nature of epilepsy, as well as negative tone (‘valence’) when speaking about the long-lasting impact of seizures (“you are just out of it for the whole day…”). This vocal quality indicates feelings of anxiety or fear, which closely aligns with the language of her response.
Considering both what is being said and how it sounds, this woman makes it clear that epilepsy impacts patients’ emotional well-being and it has effects that reach beyond the moments a seizure happens. Her response an implicit call to action for pharmaceutical companies to continue to develop more effective treatment options that alleviate these burdens.
Simple, Systematic, Scalable
Our Listening Platform makes it simple for patients to speak with us about their experiences in an open and authentic way and easy for you to engage with their perspectives directly.
If you’re interested in hearing from more patients like this one so that you can gain insight into their experiences, beliefs, behaviors, and desires, schedule a demo with us today and see for yourself.
