‘Roberto D’Angelo is the co-founder of Fightthestroke Foundation and has kickstarted the epilepsy research kit MirrorHR to support data gathering in epilepsy research and as an alerting system for caregivers, as himself. The project started from an intrapreneurship experience and it’s a concrete example of how an ethical use of AI can support patient empowerment, scientific research advance and can reduce the mismatch between the person with a disability and the environment.
Over 50 million people worldwide live with epilepsy. It is the fourth most common neurological disorder, characterized by unpredictable convulsions and causing other health complications, affecting people of all ages. A wide range of seizures is available and the medications for effective control vary from person to person. Public misunderstanding of epilepsy can cause emotional and health problems often worse than convulsions. Sometimes a person with epilepsy dies during or after an attack for no obvious reason. This sudden death in epilepsy (SUDEP) is rare and in some cases can be preventable. The risk of premature death in people with epilepsy is up to three times higher than in the general population. In low and middle-income countries, early death among people with epilepsy is significantly higher than in high income countries.
While seizures in epilepsy may be related to a brain injury or family tendency, the cause is often completely unknown. The word “epilepsy” does not indicate anything about the cause of the person’s seizures or about its severity. Many people with epilepsy have more than one type of seizure and may also have other symptoms of neurological conditions. Sometimes EEG tests (electroencephalogram), clinical history, family history and perspectives are similar in a group of people with epilepsy. In these situations, their condition can be defined as a specific epilepsy syndrome. However, not everyone has a specific identifiable epilepsy syndrome. For example, 1 in 4 with cerebral palsy and 1 in 5 with autism have epilepsy and several other disabilities.
Although the symptoms of an attack can affect any part of the body, the electrical events that produce the symptoms occur in the brain. The location of the electrical event, how it spreads, how much of the brain is affected and how long it lasts, all these indicators have profound effects. These factors determine the characteristics of an attack and its impact on an individual’s health and quality of life. Having seizures and epilepsy can affect safety, relationships, work, driving and more.
