International Epilepsy Day: Ending The Stigma
Epilepsy is one of the most common neurological diseases in the world. It is a chronic disorder of the brain that affects over 50 million people. People of all ages are epileptics, with nearly 80% of them living in low- and middle-income countries. While effective treatment exists for epileptics, many – particularly in low-income countries – do not seek treatment for fear of discrimination and stigmatization. (1)
In commemorating International Epilepsy Day, Novartis South Africa has called for greater awareness and an end to the stigma around epilepsy.
“According to the World Health Organization, in low- and middle-income countries, about three-fourths of epileptics may not receive the treatment they need,” says Dr. Chris Nathaniel, Medical Head – Specialty Care at Novartis Southern Africa. “This unfortunate ‘treatment gap’ exists despite the fact that inexpensive medication is available to control epileptic seizures. In fact, studies in both low- and middle-income countries have shown that up to 70% of epileptics can be successfully treated with anti-epileptic drugs (AEDs). Furthermore, after 2 to 5 years of successful treatment and being seizure-free, drugs can be withdrawn in about 70% of children and 60% of adults without subsequent relapse.”
However, there is low availability of AEDs in many countries. In addition, in many communities, fear, misunderstanding, discrimination, and social stigma still surrounded epilepsy for centuries, sometimes making people reluctant to seek treatment.
“It’s time to end the stigma, which can impact on the quality of life for people with the disorder and their families,” says Dr. Nathaniel.
Epilepsy is not contagious and is characterized by recurrent seizures, which are brief episodes of involuntary movement that may involve a part of the body or the entire body (2). The most common type of epilepsy is called idiopathic epilepsy. It affects 6 out of 10 people with the disorder and it has no identifiable cause. Epilepsy with a known cause is called secondary epilepsy, or symptomatic epilepsy. The causes of secondary epilepsy could include brain damage, a severe head injury or brain malformations (3).
Seizures can vary in frequency, from as little as one per year to several per day. These seizures can be highly distressing for both epileptics and those witnessing it. For many epileptics, a seizure can be preceded by a sense of impending disaster or a sense of euphoria. During a seizure, a person may lose consciousness, their muscles may relax and cause them to fall down unexpectedly. On the other hand, they may jerk and move about uncontrollably and lose control over their bowels or bladder. A seizure can also cause what sounds like screaming, as a result of muscles tightening around the vocal cords.
But not all seizures involve convulsions. A brief lapse of attention, muscle jerks, rapid eye movements, blinking and staring could also be signs of a seizure. After a seizure, the person may feel dazed and confused and have trouble remembering what happened. They may also suffer from a headache, or feel unusually sleepy or fatigued.
An epileptic seizure can interrupt heart rhythm. Thus, in the long term, epilepsy increases the risk of heart disease and stroke. Most female epileptics have healthy pregnancies, but there are increased risks.
People with seizures tend to have more physical problems such as fractures and bruising from injuries related to seizures. They also have higher rates of psychological conditions, including anxiety and depression. Similarly, the risk of premature death in epileptics is up to three times higher than the general population. This is due to a large proportion of these deaths potentially preventable, such as falls, drowning, burns and prolonged seizures.
According to the WHO, epileptics can experience reduced access to health and life insurance. They can also face withholding of the opportunity to obtain a driving license, and even barriers to entering particular occupations.
End the stigma, and seek treatment
“With effective, affordable treatment options available, epileptics need to seek diagnosis and treatment. These treatments may be able to control or avoid seizures, and minimize the other health impacts of epilepsy“, says Novartis. Patient support groups are also a good way for epilepsy patients to gain emotional support from a community of people with the same disorder and learn about common challenges and how to overcome them. Support and information for both people suffering from epilepsy and their families are available through Epilepsy South Africa.