4th International Epilepsy Day 2018 February 12th.
Epilepsy - A Few Facts
Dr.M.A.Aleem , M.D.D.M (Neuro)
President Tamilnadu Pondycherry
Association of Neurologists (TAN)
Former Vice Principal HOD and Professor of Neurology.
KAPV Govt. Medical College and MGM Govt. Hospital Trichy.
Consultant Neurologist and Epileptoligist (Trained at Institute of Neurology University College of London Queen's Square UK.)
ABC Hospital Trichy.
Every year on the second Monday of February people join together to celebrate International Epilepsy Day, started and organized by the International Bureau for Epilepsy (IBE) and the International League Against Epilepsy (ILAE).
IBE and ILAE are the two epilepsy nongovernmental organizations in official relation with WHO.
This day is an opportunity to share awareness on epilepsy (on this 4th International Epilepsy Day 12.2.2018) to educate the general public on the key facts about this neurologic disorder and on the urgent need for improving treatment and care. Not only is it essential to ensure that those in need receive epilepsy care and services, access to information about epilepsy is equally important. People with epilepsy and their families often suffer from stigma and discrimination because of the lack of knowledge and understanding about the condition.
Epilepsy or sometimes called the seizure disorder, is a chronic disorder of the brain which is characterised by recurrent unprovoked seizures. Seizures are caused due to abnormal brain cell activity. It has neurobiological, cognitive, psychological and social consequences. The epileptic seizures cause a temporary disturbance of motor, sensory, or psychological function and can cause other health problems.
In India patients with epilepsy are over 5 5.million. Among them 4.1 million epileptic patients are in rural areas in our country misconceptions about epilepsy are many.
In Trichy region the incidence of epilepsy is 60 to 70 / 100000 population added every year. The prevalance of epilepsy in Trichy is around 5.7/1000.
In our region epilepsy is common in male which is 61.10% and in female is 38.90%.
29.85% if epileptic patients are in below 18 year of age and 14.21% were above 60 years age in our district.
In Trichy district about 67.18% of epileptic patients have tried traditional healing approaches before they got anti epileptic medications.
In our Trichy area Neurocysticercosis and tuberculous the infections of the brain and head injuries are the common cause for acute symptomatic seizures .
In our Trichy region 65.80% of the remote symptomatic epilepsy are due to cysticercus calcifications in the brain.
In our area about 54.76% of our rural epileptic women are at risk to get lnjured because of their life styles like cooking at ground level, spellings of hot foods and water while transporting, sleeping near chimneys kerosene lights in the huts in night, fall during operation of manual pumps and while collecting water from wells etc.
Epilepsy is one of the most common neurological disorders, and affects people of all ages. Out of the 70 million people with epilepsy worldwide, 80% reside in developing countries.
It is estimated that there may be about 12 million people with epilepsy in India, making it to almost one sixth of the global burden. Around 14 people per 1,000 populations are prone to suffer from epilepsy in India with higher estimates in children and young adults, and in rural areas.
Epilepsy is quite a serious problem in India. People suffering from epilepsy are referred to as PWE or Persons with Epilepsy. While 60% of people in urban India consult a doctor after suffering a seizure, only 10% in rural India would do so. Nearly 70% of the people with active epilepsy do not receive appropriate treatment for their condition, leading to large treatment gap (the people who require treatment: the people who receive treatment). The lack of knowledge of anti-epileptic drugs, poverty, cultural beliefs, stigma, poor health infrastructure, and shortage of trained professionals contribute to the treatment gap.
Anti-epileptic drugs aren’t available to almost 50% patients in the public sector with less than 40% actually receiving generic medicines instead of the expensive branded ones.
Epilepsy is seen as a major health problem that was earlier considered to be a mental health disorder, however, with advancement in diagnosis and epidemiological studies, epilepsy is now considered a neurological disorder.
Epilepsy may coexist with various other psychiatric illnesses such as ADHD, Autism, Learning Disabilities, Substance use and many other. The condition can and does affect the lives of people with epilepsy, as well as their family and their friends.
Many people suffering from epilepsy benefit with anti-epileptic medical treatment and with therapy, remedial learning and cohesive family-social support.
Seizures are the only visible symptom of epilepsy. Seizures can be of various types, however, what is important to understand is that seizures typically last from a few seconds to a few minutes. During a seizure, a person experiences abnormal behaviour, symptoms and sensations, sometimes including loss of consciousness. There are few symptoms between seizures. One may be alert during the seizure or lose consciousness; they may not remember what happened during the seizure or may not even realize that they had a seizure. Sometimes, seizures may be identifiable, however, many a times, seizures may not come with warning and therefore, may be difficult to predict.
In such cases, environmental support and help may be of utmost help.
The causes for epilepsy may be varied from person to person. Head trauma as a result of a car accident or other traumatic injury, brain conditions that cause damage to the brain, such as brain tumors or strokes, may cause epilepsy. Seizures, anxiety, blank stares, headaches, sleepiness, staring spells, or temporary paralysis after a seizure are commonly seen in epilepsy.
Epileptic seizures often occur without a warning however, some people may have an aura about the seizure before it occurs.
A seizure ends when the abnormal electrical activity in the brain stops and brain activity begins to return to normal.
People may also experience the following as part of epilepsy-
Complete body fainting or fatigue
Rhythmic muscle contractions or muscle spasms
Aura or pins and needles
Amnesia or mental confusion
Depression or fear of certain things
It is believed that sometimes having epilepsy can impact a career choice, a person’s living and recreational activities and as a result. People with epilepsy (PWEs) are often advised against participating in sports and exercise, mostly because of fear, over-protection, and ignorance about the specific benefits and risks associated with such activities. Available research evidence suggests that physical exercise and active participation in sports may favourably affect seizure control, in addition to producing broader health and psycho-social benefits. School may be difficult for students with epilepsy, however there is support available in order aid their learning and in no unavoidable circumstance, should education be denied.
The Right of Children to Free and Compulsory Education (RTE) Act, 2009 mandates that every child has a right to full time elementary education of satisfactory and equitable quality in a formal school which satisfies certain essential norms and standards.
The child with epilepsy may need different support services during his/her educational years such as remediation therapy, shadow teaching and some concessions during exams. Central Board of Secondary Education (CBSE), State Boards and National Institute of Open Schooling (NIOS) make available various exemptions in order to aid learning. Provision for special needs of children with epilepsy can be sought if it can be established that a child with epilepsy has certain special needs and can be covered in any of the following 05 categories mentioned below –
1. Low Vision
2. Cerebral Palsy
3. Multiple Disabilities
4. Intellectual Impairment
Mild Mental Retardation
Specific Learning Disabilities
Despite good advances in medical therapy, Persons with Epilepsy (PWE) still face issues which seem to thwart their normal life style. While social issues form major part of their impaired life style, they face many legal hurdles making their overall life more difficult than other individuals. Living with epilepsy involves 3 major components for management of the condition-
1. Learning about epilepsy and the associated conditions- the patient as well as the family members must be educated about the illness
2. Being prepared for the seizures-A few of the most commonly reported triggers are:
lack of sleep
illness or fever
bright lights, flashing lights, or patterns
caffeine, alcohol, medicines, or drugs
skipping meals, overeating, or specific food ingredients
Identifying triggers isn’t always easy. A single incident doesn’t always mean something is a trigger. It’s often a combination of factors that trigger a seizure.
It is good to maintain a diary to make a note of when, what time and due to what factors the seizure occurred so that it may be avoided in future and thus, better managed.
Supportive and safe environment: The family, school and society along with policy makers are the major stakeholders that can help provide a conducive environment of supportive living for People with Epilepsy.
Epilepsy is quite a serious problem in India. While 60% of people in urban India consult a doctor after suffering a seizure, only 10% in rural India would do so.