Despite affecting over 50 million people globally, epilepsy often remains misunderstood and inadequately treated, particularly in low-income countries where stigma and resource shortages prevail.
Epilepsy seizures are caused by abnormal electrical signaling in the brain. Most people probably think of a seizure as jerking or thrashing, but there are other types. Some seizures look as if the person is “zoned out,” while during others, people may see or hear things that aren’t there, scream or make other noises, or collapse on the ground. When someone has a seizure, they usually don’t know what’s going on around them.
Global challenges
About two-thirds of people with epilepsy can avoid all or most of their seizures by taking daily medicines. Others may be able to have surgery, follow a special diet, or receive other therapies. Treatment gives people the chance to lead full, productive lives.
Unfortunately, of the 50 million people with epilepsy worldwide, more than 30 million are not being treated. This treatment gap is estimated at 75% in low- and middle-income countries, meaning that three-fourths of people with epilepsy are not receiving treatment. In some areas of Africa and Asia, the treatment gap exceeds 90%.
The treatment gap has several causes. One is a lack of awareness and understanding of what epilepsy is. Some cultures do not view epilepsy as a medical condition; instead, they believe that it has a spiritual or supernatural cause. In these cultures, people with epilepsy visit traditional healers, rather than medical personnel.
Historically, people with epilepsy were often discriminated against. Even today they can be targets of bias and human rights violations, including losing a job or being removed from school. Some countries still accept epilepsy as a valid reason for divorce or marriage annulment. The stigma and discrimination cause people to isolate themselves and keep their epilepsy a secret, so they are never diagnosed and given the opportunity to be treated.
Increasing treatment accessibility
Neurologists usually diagnose epilepsy and coordinate care. However, in many areas, there aren’t enough neurologists to care for everyone with epilepsy. Training programs for primary care doctors and other non-specialists can help them recognize and treat epilepsy, but these programs don’t exist everywhere. There’s still a way to go before care is accessible and affordable to everyone who needs it.
There are more than 25 anti-seizure medications, and some cost as little as $5 per person per year. However, only a few medicines are available in some countries, and it can be hit or miss as to whether they will be in stock. Cost is also still an issue; not every medicine is affordable, and many people with epilepsy can have trouble paying for treatment — especially if their seizures leave them unable to work.
Everything is connected: Fear and stigma can keep people from seeking medical treatment or talking about epilepsy. Therefore, governmental bodies or ministries of health may not know that epilepsy is an important issue in their country, so anti-seizure medicines and medical training are not a priority. If treatment is difficult to get, most people won’t get it.
Changes are happening, however. In 2020, the World Health Organization adopted a resolution to develop an intersectoral global action plan on epilepsy and other neurological disorders (IGAP). The action plan will address the challenges and gaps in providing care and services for people with epilepsy and ensure a comprehensive, coordinated response across sectors.
IGAP includes proposed actions to increase global access to care and treatment, to reduce stigma and increase support for people with epilepsy, and to increase the recognition of epilepsy as a disease that often occurs with other conditions. For example, 19% of people with epilepsy also have migraine, and about 26% of adults with epilepsy also have intellectual disability.
With support, the IGAP will help to strengthen prevention, detection, care, treatment, and equal opportunities for people with epilepsy and other neurological disorders worldwide.
Bringing epilepsy out of the shadows
Epilepsy is mostly invisible unless someone is having a seizure. However, it affects more than 50 million people worldwide, as well as millions of their family members and friends.
Within the field, we often talk about “coming out of the shadows.” We want to erase the stigma so that people who have seizures don’t feel ashamed or afraid, and so that everyone can understand how epilepsy affects people’s lives. Many people with epilepsy and their families have come out of the shadows, but they need support. The public, health care providers, the media, schools — each part of a community has a role in improving epilepsy awareness and understanding and breaking down barriers to treatment. Together, we can work toward a world where no person’s life is limited by their seizures.
