Around 50 million people experience recurrent and unprovoked seizures globally. People living with this condition have many triggers for these seizures such as psychological stress, missed medication and dehydration. Half of those living with the disease also have additional physical or psychiatric conditions.
While the physical toll of epilepsy is difficult to manage, the emotional toll is equivalently burdensome. In many countries, a large stigma surrounds patients as people perceive those with the disease as insane, untreatable and contagious. As a result, epilepsy affects people’s education, marriage and employment opportunities. The exclusion of epilepsy patients from society can even lead to increased mental health issues and delay access to proper healthcare treatments.
Epilepsy is a treatable condition if people have access to anti-seizure medication. However, roughly 80 percent of all cases are found in low or middle-income countries. Three-quarters of epilepsy patients living in low-income countries do not have access to life-saving treatment. This fact has sparked a movement in global organizations to raise more awareness about the issue of epilepsy treatment in developing countries.
Three Organizations Raising Awareness about Epilepsy Globally:
World Health Organization (WHO)
Up to 70 percent of people living with epilepsy could become seizure-free with access to treatment that costs 5 dollars per person. In order to address this treatment gap, epilepsy awareness must be prioritized in many countries. The WHO suggests that by labeling epilepsy as a public health priority the stigma surrounding the disease can be reduced. The organization believes that preventing acquired forms of epilepsy and investing in better health and social care systems can truly make a difference in alleviating millions.
Since 2012, the WHO has led a program centered around reducing the epilepsy treatment gap. The projects were implemented in Ghana, Mozambique, Myanmar and Vietnam, and utilized a community-based model to bring early detection and treatment closer to patients. Over time, the program yielded some major results in each of the countries it assisted.
Within four years, coverage for epilepsy increased from 15 to 38 percent in Ghana. The treatment gap for 460,000 people living with epilepsy in Vietnam decreased by 38 percent in certain regions. In Myanmar, over 2,000 health care providers were trained to diagnose and treat epilepsy, and around 5,000 community stigma awareness sessions were held. Continued efforts like the ones found in these countries can help spread treatment to regions of the world that need it most.
International League Against Epilepsy (ILAE)
The ILAE is another organization raising awareness around epilepsy treatment. The organization consists of health care professionals and scientists who help fund global research for treatment and potential cures to epilepsy. The major goals of the League are to spread knowledge about epilepsy, promote research, and improve services for patients globally.
With six different regions, the ILAE finds various ways to reach its goals of promoting epilepsy awareness, research and access to care globally. For example, the African region will conduct the 4th African Epilepsy Congress in Uganda to share new developments in epilepsy research in August 2019. These types of Congresses are held once a year in certain regions to continue spreading new information effectively.
The ILAE regularly publishes journals to show research findings and breakthroughs in epilepsy treatments and cures. The organization also provides information to patients themselves on topics such as psychological treatments, diet therapies and information for caretakers. With so many resources available, the ILAE has done a major service by spreading information about epilepsy treatment in developing countries.
International Bureau for Epilepsy (IBE)
The IBE focuses primarily on improving the social conditions and quality of life for people living with epilepsy. By addressing issues such as education, employment and driver’s license restrictions, this organization helps create environments free of detrimental stigmas. The IBE’s social improvement programs, designed for people with epilepsy and their families, are some of the main ways this organization impacts epilepsy awareness.
International Epilepsy Day is an example of an initiative created by this organization to promote awareness in over 120 countries. On that day, many global events are held to increase public understanding of epilepsy and new research developments that are available. In addition, the Promising Strategies program also funds initiatives improving the quality of life for people living with epilepsy. The program supports 81 projects in 37 countries and provides $300,000 in support of the projects. For example, Mongolia: Quality of Life was a program designed to improve public knowledge and reduce stigma in Mongolia after the number of epilepsy cases increased by 10 percent in 2004. Soon after the program started in 2008, the quality of life in Mongolia for people with epilepsy increased and better services were given to those in need.
These three organizations often collaborate to create new programs to spread information about epilepsy treatment in developing countries. By raising awareness of the condition and providing better healthcare services, the efforts of these organizations have created a more inclusive and helpful environment for those living with epilepsy in countries around the world.
– Sydney Blakeney