By Sharon Namarome
Every March 26, the world marks Epilepsy Awareness Day also known as Purple Day. This year’s theme “LetsTalkAboutEpilepsy” focuses on the importance of breaking down stigma by encouraging everyone to engage in open conversations in schools, workplaces, and businesses to ensure epilepsy is well understood to eradicate fear and shame.
This day was set aside to increase the public’s understanding of this brain disorder and to eliminate the fear and stigma surrounding epilepsy. Purple Day was founded by Cassidy Megan from Nova Scotia, Canada and the first event was celebrated on March 26th, 2008. Megan was motivated by her diagnosis and struggle of living with epilepsy and pushed the importance of making everyone understand this neurological disorder.
The WHO defines epilepsy as a chronic non-communicable disease of the brain that affects 50 million people globally and dates back to 4000 BC, making it one of the world’s oldest recognized conditions. The condition is characterized by recurrent seizures which are sometimes accompanied by loss of consciousness and poor control of bowel and bladder functions. Epilepsy is poorly understood even though it’s the fourth most common neurological disease, with statistics showing that 1 in 26 people will develop epilepsy in their lifetime.
The actual cause of the disease is yet to be known, however research rates brain damage from prenatal or perinatal care, genetic conditions associated with brain malformation, severe head injuries, stroke that restricts the amount of oxygen to the brain, and brain infection such as meningitis among many as the top causes.
In Kenya, data from the National Epilepsy Coordination Committee (NECC) shows that two in every one hundred Kenyans have epilepsy with the prevalence being higher in rural areas than in urban areas, primarily due to risk factors such as untreated brain infections. The medical gap in handling epilepsy cases in Kenya remains a problem leading to an increased number of epileptic cases.
Kenya lacks accessible and affordable health care services which results in poor diagnosis of the disease. The country also has very few epilepsy specialists with about 25 total including neurologists, neurosurgeons and epileptologist experts in epileptic seizures and seizure disorders. In most cases the few available neurologists are based in cities, making it difficult for those in rural areas to access help.
As we celebrate this month, it will be prudent of the Ministry of Health (MOH), stakeholders of epilepsy care and research institutions to enact proper solutions to help fight the menace. Health workers should be trained to help strengthen care in epilepsy cases. This would ensure early diagnosis which will in turn help reduce cases. Research shows that 70% of people living with epilepsy could live seizure-free lives if properly diagnosed and treated.
With WHO indicating that 80% of epileptic cases are found in rural areas, the government should ensure many epilepsy specialists are deployed in rural areas to help reach out to many. Furthermore, more research institutions should be established as they provide reliable epilepsy data through epidemiological studies. This data is very vital in the effective planning of health care towards curbing epileptic cases.
Finally, society too should be enlightened and encouraged to help those with epilepsy cases seek early medication rather than discriminating and considering them as outcasts. The government should ensure the availability of drugs within the reach of many. With efforts such as these put in place to tackle the treatment gap, a future of epilepsy-free lives is achievable.
Sharon Namarome, Sexual Health and Reproductive Youth Advocate at Naya Kenya
