Myths and Reality about epilepsy

Indian Epilepsy day is celeberated every year on 17^th November to get awareness by public about epilepsy in our country.

Myths and Reality about epilepsy

Dr.M.A. Aleem M.D.D.M.,(Neuro)

Consultant Neurologist & Epileptologist

Trained at Institute of Neurology Queen’s Square, London, UK.

Professor of Neurology,

Department of Neurology, KAPV Govt. Medical College & MGM Govt. Hospital Trichy -620001

Epilepsy is the name for a group of brain disorders characterized by fits. It is the most common serious neurological disorder, and can affect anyone. The fits can occur at any time, though in some people they may be precipitated by other events. The fits occur when recurrent episodes of brain dysfunction, with simultaneous discharge of brain cell, lead is alteration in motor sensory or other activity. Some affect localized parts of the brain and lead to partial fits which may consist of subjective experiences or involuntary motor activity or both with or without loss of consciousness. Generalized fits can occur when both sides of the brain are involved in the synchronous discharge And these can include tonic clonic fits or suble absences, body jerks or loss of postural tone . partial fit may sometime progress to generalized fits. Epilepsy has many causes. In some people the condition is inherited but in most it is caused by brain damage due to causes such as infection,trauma, stroke, brain tumor or developmental abnormalities. In meny indivituals the cause is never known. Epilepsy occurs in men and can begin at any age but is more frequently diagnosed in early life or in oldage. Various community in india continue to perpetuate many myths and misconceptions about epilepsy.Epilepsy is frequently thought of as a punishment of evil deeds or the breaking of certain taboos. But the reality is different. (Table). Various myth and misconception, often prevent people with epilepsy from seeking medical treatment. The strange behaviours caused by some forms of epilepsy has iead to a commen rural belief that epilepsy is due to “possession by spirits”. People believing in supernatural powers at work offer worship and animal sacrifice for epilesy. Muslim people consider epilpsy as the spell of “satan”.in our rural areas attempt are made to exocise evil spirit from people brain with epilepsy. Fear,misunderstanding and the result in social stigma and discrimination surrounding epilepsy often force people with epilepty “in to shadows”.

1)Myth:-Epilepsy is due to possession by evil spirits.Take the person to a scrcerer and have these spirits exorcises.	Reality:- Epilepsy is a neurological disorder.It is easy to treat with medication. So patients should be taken to doctors.
2)Myth:-Use of choppal, onion, iron bar or key and burining the skin with hot needle or iron rod during an acute attack of fit will stop the attack.	Reality:- These things will not stop the fits. Rather some time it will injure the epileptic patients.
3)Myth:- Treatment with quacks will cure the problem of fit.	Reality:- It is not possible Need qualified doctor’s help for proper anitiepileptic medication.
4)Myth:- Never touch the patients with a fit.the disorder will be passed to you	Reality:- Epilepsy cannot be passed on to others by touching the patients.Patient with fit needs your help and should be given appropriate care.
5)Myth:- Epilepsy in a family member brings stigma to the family, so this should be concealed.	Reality:- Like diabetes, hypertension epilepsy is a treatable disease. Unfortunately the stigma against people with epilepsy and their families continues to be widely prevalent. Every effort should be made to remove this stigma through health education.
6)Myth:- Epilepsy is a form of madness and it should be treated in lunatic asylum.	Reality:- Epilepsy is the disorder of brain function. So it should be treated by neurologist, physicians. There is no need for lunatic asylum.
7)Myth:- People with epilepsy should not marry.	Reality:-It is not so. it is good to get marry in right age.Try to achieve capabilities in spheres on your choice and be as much as independent as possible.Do not hide the fact on having epilepsy and details of medication. Get marryied when you find suitable candidate. If some one reasons it dose not take place do not have frustrations. Learn to live happy useful and meaning full life marriage or no marriage.
8) Myth:-Epilepsy patient can never have a children.	Reality:- Most of the epileptic patients – can safely have children with no adverse effect on the baby.
9)Myth:- Children with fits are dull and cannot learn, so they should not be sent to school.	Reality:- Most childredn with fits have normal intelligence. Some children with fits do have coexistent mental retardation ,but they have some underlying identifiable brain defect . However, it is also true that some children with fits are extremely intelligent. Therefore parents should be encouraged to enroll their children in schools along with other normal children. This way, they can regain their self – esteem and achieve their full potential.
10) Myth:- Wearing of metal ring, “Thayath” or offer worship and animal sacrifices or eating the crow flesh will prevent the epilepsy attack.	Reality:- It is not so. Only proper anitiepileptic medication will prevent the further attack of epilepsy.

It is estimated that around 50 million people in the world courrently have epilepsy of whom about 40 million live in developing countries. The number of people in the world who will ever have at least one seizure is estimated to be approximately 100 million people. Epilepsy affects about 1%of the population of South – East asia region of WHO, thus there are approximately 15 million people with epilepsy in the region.

In developed countries ,annual new cases are between 40 to 70 per 100 000 people in the general population .In the general population. In developing countries, this figure is often close to twice as high due to the higher risk of experiencing conditions that can lead to permanent brain damage. Close to 80% of epilepsy cases woldwide are found in developing regions. The risk of premature death in people with epilepsy is two to three time higher than it is for the general population.

Epilespsy is one of most common neurological disorders. It is estimated that there are more than 10 million persons with epilepsy (PWE) in India . Its prevalence is about 1% of our population, this being higher in the rural (1.9%) as compared with the urban population (0.6%). A prevalence rate of 8.8 per 1,000 population was observed Because the prevalence of the disease in rural areas is twice that of urban areas,there is much need to strengthen epilepsy services in the rural and underserved areas. The burden of epilepsy as estimated using the disability – adjusted life years (DALYs) accounsts for 1% of the total burden of disease in the world,excluding that due to social stigma and isolation, which PWE IN our country face this in turnleads to escalation of the disease burden. The annual mortaility rate estimated in the study was about 7.63/100,000. The Standardized Mortality Ratio (SMR) was found to be 2.58/100,000. Mortality rate due to status epilepsious (SE) is reported to be 29% Sudden death due to the disease varies widely between 2 and 18%. It is estimated that nearly 2-3 lakh patients may die due to epilepsy if they remain untreated. A case – control study design from the US mortality data study on epilepsy showed the association of mental retardation cerebral palsy cerebrovascular disease myocardial ischemia dementia foreign body in pharynx and larynx pneumonia alcoholism and cirrhosis of liver with epilepsy at the time of death of epilepsy patients. Stigma is referred to as a severs social disapproval of personal characteristics or beliefs that are against cultural norms. PWE face stigma in many communities. Among these, 31% thought epilepsy to be a hereditary disorder 27% a form of insanity, 40% were denied employment due to their condition, 11% of the parents did not allow their child to play with children with epilepsy and 55% of the women concealed their epilepsy during marriage negotiations. Out of those who concealed 18% were legally divorced and 20% were separated feom their spouses because of the disease. These studies reflect different aspects of stigma associated with epilepsy. The treatment of epilepsy of involves both direct and indirect costs. Direct cost includes the cost of the hospitalization, tretment, medicines, homecare and ancillary services. The indirect cost include loss of time and productivity,the income lost by family members and the foregone leisure time. The cost attributed to pain suffering and social stigma comes under intangible costs. The direct and the indirect cost of treatment represented 27.1 and 72.9% of the total cost respectively. Treatment gap in epilepsy is broadly classified into primary and secondary. About 78% of the PWE are affected by this gap . The tretment gap varies from 50 to 70% among persons with epilepsy. Various reasons have been given for the discontinuation of treatment gap. Ninety percent of the patients discontinue due to the cose factor, 21% due to unemployment 20% due to frustration 21% due to lack of medicines and 10% due to marital disharmony. Treatment gap has been found to be higher in the rural areas and in the low – income countries as per WHO. In Trichy MGM hospital inexpensive and a good number of AEDs are available. Phenobarbitone has been the frist choice of treatment in 96% of the developing countries PHT in 68.2% CBZ in 42.6% and Valproic Acid in 22.5% . Sixty percent of the patients remain free from seizures on there first appropriate drug and prefix an additional 13% on a combination of two drugs. 70 -80%of PWE are controlled with one to two medicines. Ninety percent of seizure – free patients took only a moderate dose of AEDs. If a PWE has been properly treated it would result in a seizure – free good qulity of life. The unnecessary cost of the treatment and burden would be curtailed by providing medication. Based on the total projected population of India in the year 2001. The estimated number of people with epilepsy would be 5 million. Because rural population constitutes 74% of the India population the number of peopie with epilepsy in rural area will be approximately 4.1 million , three forth of whom will not be seeting any specific treatment as per the present Standard. In our Trichy District about 60-70 new cases of epilepsy are detected in every one lakh population every year. Despite global advances in modern in medicins, epilepsy continues to the surrounded by Myths and misconceptions patients with epilepsy may be taken to faith healers religious healers and traditional healers rather than medical doctors and 10 – 20% of all patients with epilepsy receive appropriate treatment. In our district population of epilepsy patient about 68.85% of them got traditional treatment or faith healing approaches once or many times during their disease period. Even for the first fit about 43% of the patient had traditional treatment in our district.

As described, the myths and misconceptions prevalent in most of our communities abd the lack of awareness regarding the medical nature of epilepsy amongest patients and their families need to be educated patients to seek the help of unconventional sources. Patients and their families need to be educated regarding the medical nature of epilepsy, its characteristics, causes and prognosis.They should also be educated about the importance of compliance in treatment, the potential side effects of drugs and the duration of treatment. Communication specialists may be used to develop educational materials (booklets, posters, plays,television and radio messages) on epilepsy to inform the community, thereby reducing the social stigma attached to epilepsy. Involvement of community leaders and schoolteachers, in these activities should be encouraged.

In India

• To promote public awareness about epilepsy: alleviation of myths and misconceptions and enhance prevention.
• To reduce the treatment gap of epilepsy in India.
• To build capacity at all levels of human resource for the management of epilepsy.
• It in an urgent need to formalate a national epilepsy management program in our country

WHO response

Epilepsy is a chronic disorder of the brain that affects people in every country of the world.WHO and its partners recognize that epilepsy is a major public health concern. WHO,the International League Against Epilepsy (ILAE) and the International Bureau for Epilepsy (IBE) are carrying out a global campaign, ‘Out of the Shadows’ to provide better information and raise awareness about epilepsy , and strengthen public and private efforts to improve care and reduce the disorder’s impact. Projects to reduce the treatment gap and morbidity of people with epilepsy,train and educate health professionals, dispel stigma, identify potential for prevention and develop models integrating epilepsy control into local health systems are ongoing in many countries. So WHO should adopt world epilepsy day in hand with ILEA/IBE to bring epilepsy out of no shadow inreality all over no world.

Dr.M.A.Aleem M.D.D.M., (Neuro) Professor of Neurology, Department of Neurology, KAPV Govt. Medical college & MGM Govt. Hospital Trichy-620001

Note: Dr.M.A.Aleem is specially trainedin Epilepsy at Institute of Neurology Queen’s London, UK. His training was sponsored by Indian Academy of Neurology. He is doing a lot of research on Epilepsy on in our district population. He is published more than 102 research paper in the field of epilepsy and stroke.