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The theme of InternationalEpilepsyDaythisyear-the epilepsy journey- has been chosen to spotlight the lived experience of people with epilepsy and those who are for them, aiming to align with and high light the importance of IGAP’s10-year roadmap.
Epilepsy Facts
1. Epilepsy is a chronic noncommunicable disease of the brain that affects people of all ages.
2. Epilepsy affects both males and females of all races, ethnic backgrounds and ages.2\
3. Epilepsyisaconditioninwhichapersonexperiencesrepeatedseizurescaused by abnormal electrical activity in the brain.
4. Oneseizuredoesnotsignifyepilepsy(upto10%ofpeopleworldwidehaveone seizure during their lifetime). Epilepsy is defined as having two or more unprovoked seizures.
5. Seizures can look different for everyone. Seizures don’t always involve shaking of muscles. A person may be unresponsive, lose consciousness, wander around and experience confusion, funny feelings taste, or smells, or fall to the ground and shake.
6. Epilepsy is a broad term used for a brain disorder that causes seizures. There are many different types of epilepsy. There are also different kinds of seizures.
7. Epilepsy can be caused by a variety of factors, including genetic factors, head injury, brain infection, stroke, and abnormal brain development.
8. Epilepsy can have a significant impact on aperson’squalityof life, and people with epilepsy may face stigma, discrimination and other challenges.
9. Epilepsy is one of the world’s oldest recognized conditions, with written records dating back to 4000 BCE.
10. The Greek philosopher Hippocrates (460-377BC)was the first person to think that epilepsy starts in the brain.
11. Epilepsy has affected several famous people, including Julius Caesar and Vincent Van Gogh.
Epilepsy Statistics
1. Around 50 million people worldwide have epilepsy, making it one of the most common neurological diseases globally.
2. Globally, an estimated 5 million people are diagnosed with epilepsy each year.
3. Nearly 80% of people with epilepsy live in low- and middle-income countries.
4. The death rate for people with epilepsy is three times that of the general population.
5. The risk of premature death in people with epilepsy is sometimes higher than in the general population.
6. Epilepsy rates are higher in low and middle-income countries, with some areas seeing rates as high as 10%
7. An estimated 70% of people with epilepsy could live seizure-free if properly diagnosed and treated.
8. An estimated 25% of epilepsy cases are preventable.14 9. Adequate perinatal care can reduce cases of epilepsy caused by birth injury.
Epilepsy Stigma
1. Fifty percent of adults with epilepsy experience social stigma result of their epilepsy.
2. Some common misconceptions about epilepsy are that it is contagious, that it is a mental health condition, and that those with epilepsy cannot lead normal lives.
3. For people with epilepsy, negative attitudes toward epilepsy have significant social implications and impair quality of life.
4. A person with epilepsy may experience reduced access to educational opportunities, a lack of driving privileges, and difficulty entering particular occupations.
5. Many countries have laws reflecting centuries of mis understanding about epilepsy, including those allowing marriages to be annulled because of epilepsy and those denying access to restaurants, theatres, recreational centers, and other public places.
6. Epilepsy stigma can significantly delay diagnosis and treatment as some people are reluctant to seek medical help because of fear of discrimination.
7. Epilepsy-related stigma exists at all societal levels, impairing the quality of life and social well-being of people with epilepsy and their families.
8. Legislation based on internationally accepted human rights standards can prevent discrimination and rights violations, improve access to healthcare services, and raise the quality of life for people with epilepsy.
International Epilepsy Day is a key initiative that the epilepsy community will use to drive the implementation of the World Health Organisation’s [WHO] 10-year Intersectoral Global Action Plan on Epilepsy and other Neurological Disorders (2022-2031) or IGAP.
IGAP is a ten-year roadmap that contains a specific strategic objective to strengthen the public health approach to epilepsy and two global targets aiming to close the major treatment and inclusion gaps for people with epilepsy worldwide:
- Global target 5.1: By 2031, countries will have increased service coverage for epilepsy by 50% from the current coverage in 2021.
- Global target 5.2: 80% of countries will have developed or updated their legislation with a view to promoting and protecting the human rights of people with epilepsy by 2031.
One of the key barriers to achieving these epilepsy-specific global targets is the low levels of health literacy and the high levels of misunderstanding and misconceptions about epilepsy.
This lack of knowledge translates into social stigma and exclusion and leads to the discrimination of people with epilepsy across all levels of society. For example, at work, at school or in the community.
Lack of knowledge can also contribute to challenges in access to treatment due to misdiagnosis, inappropriate treatment decisions, inadequate provision of care and insufficient support for people with epilepsy and those who care for them. In fact, due to the stigma surrounding epilepsy, in many parts of the world, those affected will not come forward to seek care.
Additionally, lack of knowledge also hampers prioritisation of, and resource allocation, to epilepsy by our policy and decision-makers, and acknowledgment of the need for specific policies and programmes to address the burden of epilepsy.
Therefore, this #EpilepsyDay, we want to improve knowledge levels about epilepsy amongst all sectors of society by asking people with epilepsy and those who care for them to share their Epilepsy Journey.
Join the conversation by sharing your journey with us, or explore the journeys of others to gain a deeper understanding of the impact of epilepsy worldwide
Let’s learn from one another how we can effectively implement IGAP’s ten-year roadmap to overcome obstacles and improve care for epilepsy globally.
