In Pakistan, epilepsy patients face immense stigma

Pakistan observes International Epilepsy Day on the second Monday of February each year. This year, the day around this common brain disease will be focused on the theme of ending the stigma that people living with epilepsy — a crippling neurological disorder — face as several superstitions surround the condition.

In a news conference conducted by the Neurology Awareness and Research Foundation (NARF) and Epilepsy Foundation Pakistan, neurologists spoke about raising awareness and educating society about the disease, as Pakistan has 2 million patients of the disease who struggle with discriminatory societal behaviour.

Based on a joint survey conducted by the two organisations, participants of the presser — which included Chairperson EFP Dr Fowzia Siddiqui along with NARF's Prof Dr Muhammad Wasay and Prof Dr Abdul Malik — said that epilepsy patients face immense stigma. For instance, women who suffer from this brain disease found it difficult to form social connections, children skip school due to depression and social isolation.

Even though 70% patients who receive proper treatment have had seizures free life — but according to the survey — the social exclusion of patients is a problem that continues to persist.

The number of epilepsy patients in the world is 1%, while in Pakistan, it is up to 2%. People under 30 are most commonly affected by the disease. In rural areas, epilepsy is more prevalent with 27.5% cases when compared with urban areas where the percentage of epileptic people is 2.9%.

Epilepsy, similar to other diseases such as diabetes and asthma, demands continuous medications and proper treatment.

Strong superstitions regarding the disease exist in our society and impact patients. It was shared during the presser that it was challenging for women suffering from epilepsy to married with some either having their engagements called off or getting divorced later.

Doctors stated that the marriage or separation of patients with epilepsy increased society's burden in both circumstances. Patients, due to the stigma of epilepsy, faced challenges finding jobs and acquiring admission to educational institutes.

Another significant problem is the availability of cost-effective medicines. In past years, either shortage or unavailability of cheaper medications in the market has placed the burden of buying expensive medications on patients.

Expensive medications delay treatment and trigger additional financial pressure on the patient's family. These medications are primarily life-saving and if not taken on time, a patient's brain cells could start deteriorating after each seizure. Moreover, such brain cells cannot rebuild themselves after being damaged.

The participants at the press conference urged the government to ensure drug subsidies and patients' access to cheap but quality medicines.

In Pakistan, the prevalence of brain infections is one of the major causes of epilepsy such as Tuberculous meningitis, while a head injury, brain infection, blood pressure, sugar, high salt intake, and alcohol use could also trigger the disease.

The disease can begin at any age, also after 50 years. It may even be caused by illness or a shortage of oxygen in early childhood. For the past 50 years, high blood pressure, diabetes, and brain tumours have been the three main causes of epilepsy.

There are several myths and legends surrounding the treatment of epilepsy. Due to the patient's abrupt loss of consciousness in this condition, the body undergoes severe shocks and stiffness.