Hesperian Health Guides
How do we support people with epilepsy
HealthWiki > Epilepsy and Seizures > Chapter 1: Introduction > How do we support people with epilepsy
For many years, health and medical systems wrongly regarded epilepsy as a mental illness rather than a brain condition with physical causes. Many cultures believe epilepsy is a spiritual illness, caused by a curse, witchcraft, possession by evil spirits, or sins committed by the person, their relatives, or ancestors. This widespread misinformation combines with a lack of easy-to-understand and accurate information about epilepsy and adds to stigma and the poor treatment of people with epilepsy. This book provides updated information to help people with epilepsy and their families act against stigma and improve their quality of life.
Raising awareness and improving care and support for people with epilepsy should not just be the concern of the person who has it or their familyâit is a community responsibility. This book contains practical, actionable information about epilepsy that will be useful for everyone. Understanding epilepsy is important and possible for people with limited formal education or medical training, for community health promoters, frontline health workers, and midwives, for social workers, teachers, religious leaders, and faith healers, and for government, administrative, and law-enforcement personnelâfor all community members.
Contents
Seizure first aid
A seizure can look alarming or scary to a person seeing one for the first time. People witnessing a seizure often freeze because they do not know how to respond, and sometimes they even run away in fear.
Training people in seizure first aid is simple and can transform negative responses to seizures into helpful ones. By understanding the basics of seizures and how to help a person having a seizure safely recover, many injuries can be prevented (see Chapter 2: How to help a person having a seizure).
Holding seizure first aid trainings also helps to break the silence that surrounds epilepsy. As people learn more about the condition, they may also begin to understand how much of the âproblemâ of epilepsy lies in their lack of understanding, not in those who have epilepsy.
Access to treatment and medicines
Health worker training. Most health workers receive little or no training about epilepsy. Epilepsy treatment is often categorized as a âspecialty.â This creates barriers to treatment when hospitals or clinics do not hire enough âspecialistsâ and do not prepare health workers to care for people with epilepsy. When health workers at all levelsâdoctors, midwives, nurses, health promoters, and othersâ are trained to recognize and treat epilepsy and seizures, not only will healthcare improve, but epilepsy stigma and discrimination will decrease.
Health access. When medical systems, insurance rules, and disability policies do not include epilepsy, antiseizure medicines and services for epilepsy are often difficult to find and afford. Social security and health institutions must recognize peopleâs right to accessible and affordable epilepsy treatment.
Access to medicines. New medicines better target different types of epilepsy and have fewer side effects. Unfortunately, they are often unavailable in low-resource settings or have a higher price. Due to financial pressures as well as inadequate supply chains, pharmacies and clinics often run out of stock of antiseizure medicines, which is a big problem since these medicines must be taken daily. A variety of antiseizure medicines must be included in essential drug lists globally and made available at affordable prices.
Nonmedical treatments. Medicines are not the only treatment for epilepsy, which is good because some seizures are not well-controlled by them. Medicines work best when combined with enough rest, nutritious food, special diets, exercise, and learning how to avoid seizure triggers. Health workers need to learn more about and promote these other treatments.
Social acceptance. Organizations, businesses, and institutions need to change rules that create barriers to full participation by people with epilepsy. Social barriers that limit access to medicines and treatment must be removed as well.
Severe forms of epilepsy
Some forms of epilepsy can be severely disabling. Some rare childhood epilepsy syndromes can delay or impair the development of speech and other brain functions. When medical treatment is delayed, for epilepsy or for the treatment of infections that can result in epilepsy, the frequency of seizures and the damage they cause can increase. Also, when epilepsy occurs with another health condition, for example, with cerebral palsy, treatment can become more complicated. People with epilepsy have the same rights as everyone else to live a full life, on their own terms, and that means they have a right to the treatment and support they need.
Even when a personâs seizures are well-controlled, it is possible that their health may change suddenly with no clear reason why. A rare condition called sudden unexpected death in epilepsy (SUDEP) can result in immediate death. This condition is especially shocking for family members who, like most people, are unaware that epilepsy can cause death. Regular access to medicine and ongoing care seems to lower the risk of SUDEP. More research on its prevention is needed.
Epilepsy stigma
The negative feelings, unfair behaviors, discouragement, discrimination, and fear directed at people with epilepsy make living with the condition more difficult. Some people say the stigma directed at them is much harder to deal with than the physical effects of seizures.
Epilepsy stigma can be internalized and make a person feel bad about themselves and their abilities.
Interpersonal stigma can cause others to avoid, exclude, or deny the rights of people with epilepsy. And institutional stigma can prevent people with epilepsy from attending school, getting the care they need from the health system, and finding the employment they need to survive.
Some of the most powerful forms of epilepsy stigma are directed at people wanting to get pregnant and have children. Some people with epilepsy are told they should never get pregnant, undermining their confidence and denying them the joy of building a family. Womenâs needs are often ignored by pharmaceutical companiesâfew medicines are safe to use during pregnancy, and the ones that are can be difficult to access. But with the right medical and social support, people with epilepsy can have healthy pregnancies and safe deliveries, and can breastfeed and raise their children.
People with epilepsy are challenging all forms of stigma. Through support groups and community education, they are helping people understand epilepsy. By lobbying to change policies, practices, and laws that limit what people with epilepsy can achieve, they are changing our societies for the better.