We built our application, Pebilepsy, for members of Eric’s family who both have struggled with epilepsy their entire lives. Eric and his family looked for ways to prevent further incidents. When they sought specialists and used medications, the family members quickly found that they were still having micro-epileptic episodes, informally called "shakes".
Though epilepsy patients have medication, specialists and other forms of prevention, shakes are still common and are very wide spread. During appointments to the specialists, questions on these shakes often asked impossible to answer questions without biometric tracking or very subjective questions of the severity of these episodes. Additionally, nocturnal seizures could be a risk, as a majority of patients go un- or misdiagnosed due to a lack of active monitoring by other people during sleeping hours. Additionally, the disrupted sleep cycles substantially raises the risks of both day- and night-time seizures in these patients.
Pebilepsy targets North American sufferers of nocturnal seizures, specifically those with myoclonic and tonic-clonic seizure attributes. We target users that have had a history or signs of nightly seizure triggers or excessive sleep deprivation. In North America, 1% of the population has epilepsy, and between 6-10% of those has nocturnal seizures; our initial market is between 213,000-354,000 people. We intended to encompass more nations after the initial trial. With 50 million epileptics globally, developing nations represent a hefty majority, over 80%! This represents a 4.5-7+ million user global market. Due to a lack of medication, health services and applicable medical data, they also represent the global majority of nocturnal seizure suffers. I Introduction of affordable smartphones and wearables make this an attainable market in the coming years.
Pebilepsy is a Pebble application that syncs with mobile and web platforms. A user activates the application before going to bed. Nocturnal seizures are most prevalent during light sleep, soon after going to bed and waking up. The majority of these seizures are tonic-clonic. After use, data is instantly uploaded to the web and mobile platforms, recording the number of seizure like incidents and the severity of the attack.
We use Pebble's accelerometer specifically to target our audience. Recording during sleep makes the data more accurate, and Pebble's battery life allows us to produce detailed logs of nightly episodes. Information is then sent to stakeholders in two formats. To the user & their physician, a detailed visualization is provided of the number of episodes and levels of severity. Use of Pebble's accelerometer allows us to segment episodes by degree of attack. The second format produced is primarily for third party research and data extraction purposes. Produced in CSV, we provide a platform specifically to enable easy summation of the data as well as its raw form.
Three key features set Pebilepsy apart from its competitors. Firstly, Pebilepsy represents an affordable and practical method of data collection. Other solutions rely on expensive and bulky equipment or impractical methods, such as invasive devices or sleeping with a cell phone. Second, this market is grossly under-serviced. Because this condition is difficult to monitor and often misdiagnosed, current available data is incomplete at best. So much so, that our application could immediately produce several new forms of data inputs that could be viable applications to future clinical research. Nocturnal seizures are rarely witnessed by specialists, people living with epilepsy or their family members, thus Pebilepsy would be a welcome addition to the diagnostic armamentarium! Finally, combine the Pebble's accelerometer and data visualization technology to produce new and unique insights. We can track the number and severity of an attack, as well as which parts of the body are convulsing the most. This enables better research capabilities, prevention methods and analysis of an under-diagnosed condition.
Having family who live with epilepsy, as well as working with Epilepsy Ontario on prior initiatives, this is a cause Eric and our team believes in. Until now, the technology, data and necessary infrastructure were unavailable. We are entering a phase of information and technological revolution, where niche health care conditions can get the attention, medication and available data they need to live higher quality lives. Pebilepsy will be the first important step in this journey.