Don’t let Epilepsy rule your LIFE
Understanding epilepsy is key to control seizures
As a woman, you have many dynamic roles to play in the society. Nothing should hinder with your capabilities to lead a healthy and successful family and professional life — not even epilepsy, which is a neurological disorder. No matter what stage of life you are at, the foremost thing you should do to improve your seizure control and overall health is to educate yourself about epilepsy. Also, maintain an open line of communication with your doctor and take an active role in your treatment.
Women with epilepsy, however continue to face misunderstanding about their conditions. As a result they face discrimination in the society. The impact of the neurological disorder, epilepsy is on the minds of thousands of women and girls who are living with it. Those who want to get pregnant worry about a number of things related to pregnancy and motherhood. However, it’s time that fear of seizures and drug side effects do not hold you back from embracing the bliss of motherhood
Dr. SK Poddar MD (Med), DM (Neurology), Neurology Centre states “Many women with epilepsy have children and a normal family life. Having epilepsy doesn’t usually make it hard for woman to get pregnant. Though some women with epilepsy may have a condition called polycystic ovarian syndrome (PCOS), which is associated with irregular periods and weight gain that can also affect reproductive health. However, epileptic women can successfully become pregnant with appropriate measures. So, one should consult her doctor for all the queries she has in her mind.”
Of the 70 million persons with epilepsy (PWE) worldwide, nearly 12 million PWE are expected to reside in India; which contributes to nearly one-sixth of the global burden. The overall prevalence (3.0-11.9 per 1,000 population) and incidence (0.2-0.6 per 1,000 population per year) data from recent studies in India on general population are comparable to the rates of high-income countries (HICs) despite marked variations in population characteristics and study methodologies. There is a differential distribution of epilepsy among various socio-demographic and economic groups with higher rates reported for the male gender, rural population, and low socioeconomic status.
Many people with active epilepsy do not receive appropriate treatment for their condition, leading to large treatment gap. The lack of knowledge of antiepileptic drugs, poverty, cultural beliefs, stigma, poor health infrastructure, and shortage of trained professionals contribute for the treatment gap. Infectious diseases play an important role in seizures and long-term burden causing both new-onset of epilepsy and status epilepticus. Proper education and appropriate health care services can make tremendous change in a country like India.
Epilepsy is not a curse or any mental illness or a sign of low intelligence. It’s not contagious either. But misconceptions rule strongly….condemning patients to miserable lives.
Dr. Avinash Chandra SinghMD (Med), DM (Neurology)Shaurya Neurology Centre states that assuredly remarks “Epilepsy can be controlled in 75-80% of the cases with right medication. Early diagnosis and right treatment help in further damage to the person’s mental and physical state. However, deeply entrenched cultural beliefs combined with stigma and lack of awareness are pushing people to quacks, traditional healers and other methods, often with detrimental consequences. Only a miniscule number of patients approach a proper medical professional for help”.
Being a woman with epilepsy is not the same as being a man with epilepsy. Epilepsy affects sexual development, menstrual cycle, aspects of contraception, fertility, and reproduction. Yet with anti-epileptic medication one can lead a normal and happy married life with the ability to achieve the highest success,” added Dr. SK Poddar MD (Med), DM (Neurology), Neurology Centre states
Though the condition requires long term treatment it may or may not continue for life long. The criteria for stopping or reducing the medication depends on the patient’s condition. It depends on the type of epilepsy, the age of onset of symptoms, extent and duration of control over the epileptic attacks when under treatment. Doctor may stop the medication if the patient remains seizure-free for a period of 2—5 years. This decision is made after analysing different aspects of the situation. However, there are chances that the seizure may occur again after stopping treatment and the treatment might have to be started again.
The burden of epilepsy could be reduced in India by alleviating poverty and by reducing the preventable causes, viz. perinatal insults, parasitic diseases, and head injuries. Empowering primary healthcare workers to diagnose and start treatment might significantly reduce the treatment gap and the disparities between rural and urban areas.
“Don’t patronize me because I have epilepsy…. Treat me with respect and don’t talk down to me I want to be understood without judgment or pre conceived assumptions” pleas an epileptic woman to the society.
On this World Epilepsy Day let us hear her appeal and let us make this world caring, loving and worth living for her too.
Ann Indian Acad Neurol. 2015 Jul-Sep; 18(3): 263–277.
General myths and facts about epilepsy in the society
1. Myth: Epilepsy is the result of possession by evil spirits. The treatment is to exorcise such spirits through faith healers or alternative therapies.
Reality: Epilepsy is a neurological disorder that is treated with medication. The patients should be taken to a qualified doctor.
2. Myth: An epileptic attack can be stopped by making the patient smell an onion or branding the skin with a hot needle or iron rod.
Reality: Such methods only cause more injury and do not help the patient.
3. Myth: If you touch an epileptic patient during a seizure, the disorder will pass to you.
Reality: Epilepsy is not contagious and does not spread by touch.
4. Myth: Epilepsy brings stigma to the family, so the patient should be hidden.
Reality: Epilepsy is a treatable disease just like diabetes or hypertension. There is no reason to hide an epileptic patient. Ensure that they get timely treatment and that they take their medication regularly.
5. Myth: Epilepsy is a form of madness and the patient needs to be admitted in an asylum.
Reality: Epilepsy is the disorder of brain function. So it should be treated by a neurologist.
6. Myth: People with epilepsy cannot marry nor have children.
Reality: As long as the patient takes his/her medication and does not hide the condition, there is no reason why he/she cannot marry or have children.
7. Myth: Children who have seizures should not be sent to school.
Reality: Most children who have epilepsy are intelligent. In some cases, there may be some co-existent retardation but that is due to an abnormality in the brain. Again, as long as the child takes the medication regularly, he/she can go to school.
8. Myth: Wearing a metal ring, talisman or offering animal sacrifices will prevent seizures.
Reality: Nothing can prevent seizures except antiepileptic medication.
Despite various efforts across the world to create awareness about epilepsy, a lot of misinformation still persists. This prevents patients from seeking proper medical treatment. We need more awareness programs that will reiterate that epilepsy is a disease like any other and that people with epilepsy are no different from others.