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Let us #stampoutstigma of epilepsy: Epilepsy can affect children of all ages. It is common affects 1% of the overall population- possibly even more common in children. Despite this, epilepsy has much stigma surrounding it. With the stigma come the myths. The stigma, myths, and misconceptions make life with epilepsy difficult even when seizures are fully controlled. The stigma and the myths also compromise patient safety. So, Nh-SRCC's senior neurologist Dr Pradnya Gadgil tries to clear a few myths surrounding epilepsy.
Let's Understand Epilepsy
An all-pervasive myth is that epilepsy or epileptic seizures are a sign of a mental or psychiatric disorder or is a curse by an exorcist. In reality, epilepsy tends to experience epileptic seizures secondary to underlying brain disease. Simply put, these can disturb the brain's electrical circuits.
The stigma discourages patients and families from seeking medical attention in the context of epilepsy being an entirely treatable condition in the majority. In addition, the misconceptions regarding seizure first aid make it very dangerous for patients.
People wrongly think splashing water, giving water/sugar/ energy drink, smelling onions/ 'chappals', pushing a metal object/ putting fingers in the mouth are helpful first reactions when they are NOT.
Not only are they unhelpful- these first responder actions can be downright harmful to the unconscious patient. The correct response is to put an unconscious patient on their left side, not put anything in their mouth or face, not crowd if they are actively convulsing, not hold them down and call for medical help.
The myth that epilepsy being a curse can be cured by voodoo, black magic or other rituals is dangerous as it deprives the patient of a correct diagnosis and the appropriate treatment. If any child is experiencing paroxysmal events, they should see a family doctor or paediatrician asap. These doctors may guide the family to meet a paediatric neurologist who may conduct a few tests, such as blood tests, an EEG and an MR scan, and commence treatment as deemed appropriate.
Another myth is that anti-seizure medications are harmful and patients get 'addicted; to them. On the contrary, the anti-seizure drugs that have been in use for the last 20 or so years are exceptionally well tolerated- i.e. not addictive, do not make the child dull or tired, and overall side effects are rare.
Epilepsy And Disability
People often assume that children with epilepsy are not intelligent, have odd behaviours, are violent, are 'different' or 'not normal'. Unfortunately, nothing could be further from the truth for the large majority.
In a section of patients with epilepsy, physical and intellectual disabilities coexist. It is important to note that epilepsy and disability are symptoms of underlying brain disease. Epilepsy by itself rarely causes disability.
Teachers, neighbours, relatives, etc., treat these kids differently. However, most children with epilepsy can attend mainstream school and participate in extracurricular activities like their peers.
Families should check these specific points with their doctor. We expect that most children with epilepsy should be able to study, pursue careers and hobbies, marry, and bear children . i.e. live a 'normal' life.
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