Of neurons and normalcy: How epilepsy and the stigma associated with it can impact lives

When Fatima Sana Shaikh talked about her condition on February 10, celebrated as International Epilepsy Day, she shed light on one of the most common neurological disorders worldwide, but one which still carries stigma

Till the age of 28, Sheikh Imran was a “non-disabled” person. He worked with a US-based MNC, and though he had epilepsy, his life looked normal, filled with routine chores and his favourite activities like catching movies at the theatres and cruising on his motorcycle across the city.

Epilepsy is not a disability in India.

But Imran’s life changed overnight when he had an epileptic seizure that caused him to fall from the fourth floor of his apartment building. He suffered a serious spinal cord injury and lost all mobility from the chest down.

Akanksha Patankar Mirji, a former senior media professional and an epilepsy warrior, is on a mission to raise awareness and support about epilepsy through her active involvement in advocacy and support groups in Mumbai. Pic/Nimesh Dave

While Imran, now 31, says that he feels strong and has adapted to life with a high-level disability, doctors remain uncertain about the likelihood of his recovery.

This is an extreme example of the kind of impact epilepsy can have on one’s life. Imran says, “I was unfortunate to be alone on my apartment balcony when the seizure occurred, with no one nearby to help me.” But for many, the condition itself is often left unchecked or not attended to promptly. “If people understand this condition, others can receive better care and support they need,” he adds.

Despite advancements in medicine, epilepsy remains a major taboo, especially in rural India. And even in cities, the insecurity and fear of rejection from society due to the condition are real.

Pooja Mehta Nandi and Dr Jayanti Mani

For instance, actor Fatima Sana Shaikh, who was diagnosed with epilepsy during the shooting of the 2016 sports-drama film Dangal, recently said that she was scared that she would not get work if her condition was known.

She spoke to Sunday mid-day about how her life with the condition has shaped her perspective on life and her career in films.

She told us, “I have a lot more perseverance now. [Now] it’s work as usual for me. Yes, In the beginning, I was afraid that epilepsy might hinder my work and growth as an actor, but over time, I have learned it’s about facing what you consider challenges, head-on and using it as a source of strength. Now, I approach each character with a greater sense of empathy, recognising that everyone has their own struggles.”

“But the reality,” she says, “is that epilepsy looks different for everyone. There’s no ‘one-size-fits-all’ experience, and you can lead a normal life if you are cognisant. What’s crucial is taking your meds on time, regularly following up with the doctor and most importantly accepting that you have epilepsy.”

For many others, the change was both emotional and professional.

Fourteen years ago, Andheri-based senior marketing communications professional Akanksha Patankar Mirji was diagnosed with epilepsy during her first pregnancy. The initial seizure occurred one morning when she woke up on the shower floor and attributed her fatigue to lack of sleep. Some months later she had her first tonic-clonic seizure, also known as grand mal—a type of seizure that involves a stiffening phase (tonic) and a twitching phase (clonic)—which her husband witnessed.

Patankar told Sunday mid-day, “My husband was terrified but made sure I didn’t hurt myself. The seizures recurred, and eventually I was diagnosed with epilepsy.”
The seizures subsided after the birth of her son in 2011, but returned eight months later during her second pregnancy. This time, the condition was identified as eclampsia, a rare pregnancy-induced form of epilepsy.

Dr Jayanti Mani, a neurologist at Kokilaben Dhirubhai Ambani Hospital, tells Sunday mid-day, “There are 40 different types of epilepsy, each with its own set of symptoms and triggers.”

Patankar’s case was an extremely rare one, that occurs in just one out of 10,000 persons with epilepsy. Largely, it affects 50 million people worldwide, as per the World Health Organisation.

But Patankar’s resilience prevailed, thanks to following strict instructions from her gynaecologist and neurologist. “Adhering to medical advice is crucial in managing epilepsy,” she says.

However, in order to manage career stress, which was a significant trigger for her seizures, she changed her profession to focus on her health and well-being, on her neurologist’s advice.

Patankar says, “It was the best decision for my health and happiness. I’ve been seizure-free for almost three years now, and leading a healthier, happier life.”

However, challenges are not limited to work alone. Entrepreneur and neurodiversity advocate Pooja Mehta Nandi of Samman Association [Mumbai Chapter of Indian Epilepsy Association], says, “Education is where we need to catch up the most. If a child has a seizure at school, teachers may hesitate to include them in activities, despite the child having a normal IQ and being on medication.”

Nandi, an epilepsy warrior herself, says this reaction stems from a lack of awareness and understanding of the condition.

The WHO says 70 per cent of individuals can lead normal lives with proper medication and support. “However, the remaining 30 per cent with severe epilepsy and comorbidities face greater challenges,” explains Nandi.

Employment and marriage are other areas where individuals with epilepsy encounter stigma and discrimination. “Disclosing one’s condition can lead to job rejections and difficulties in forming relationships, particularly for women,” Nandi says.

Lack of first-aid knowledge is a fallout of the overall ignorance about the condition, says Nandi. “Misguided actions such as forcing objects into the mouth or using strong-smelling substances can cause more harm than good,” Nandi says.

In rural areas, where stigma is more pronounced, people still attribute seizures to supernatural causes. Awareness is improving, but there’s a long way to go, Nandi adds.

During our research, we found that government initiatives for epilepsy are minimal, with people often struggling to get a disability certificate from the authorities if they have this condition. Even insurance claims cannot be made for epilepsy-related hospitalisations. “Despite there being no explicit policy, patients are often denied coverage due to perceived high risk,” Nandi says.

So, how can one foster inclusivity for individuals with epilepsy? Dr Mani says, “One must first understand how the brain functions. Our brains operate through electrical currents that enable everything from movement to thought. In epilepsy, these currents go awry momentarily.”

While epilepsy cannot be cured, it can be effectively managed.

Dr Mani emphasises, “With proper diagnosis and medication, most individuals with epilepsy can lead full, productive lives. The key is early identification and treatment adherence. However, it’s important to note that even with medication, it’s difficult to predict with absolute certainty whether someone will ever have another seizure. Regular follow-ups here are the key.”

Despite denial still being prevalent, Dr Mani says, “Over the years, I have seen a significant reduction in stigma around epilepsy. The majority, I believe, now understand that it is a medical condition requiring professional care. This shift is encouraging.”

Pic/iStock

70%
Percentage of people who can control their seizures with anti-epileptic drugs

50 mn
No. of people affected by epilepsy worldwide
Source: WHO

What can you do 

Basic first aid for epileptic seizure

During the seizure
1. Stay calm
2. Protect the person  
.  Cushion their head with something soft
.  Move sharp or hard objects away toprevent injury

3. Do not restrain 
Avoid holding the person down or trying to stop their movements
4. Turn them on their side Gently roll them onto their side (recovery position) to help keep their airway clear and prevent choking
5. Loosen tight clothing Remove or loosen anything around their neck (eg ties, scarves
or collars)
6. Time the seizure
Note how long the seizure lasts. If it lasts longer than 5 minutes, seek emergency help

After the seizure
1. Stay with them: Remain until they are fully awake and aware of their surroundings
2. Comfort and reassure: Speak calmly and reassure them as they may feel confused or disoriented
3. Check for injuries: Look for any injuries that may have occurred during the seizure
4. Allow rest: Let them rest or sleep if needed, as seizures can be exhausting

When to seek SOS
.  If seizure lasts longer than 5 minutes
.  If second seizure occurs immediately
.  If the person has difficulty breathing or waking up after the seizure
.  If the person is injured, pregnant, or has diabetes
.  If it’s their first seizure or you’re unsure

Things to avoid
.  Do not put anything in their mouth
.  Do not offer food or drink until they are fully alert
.  Do not try to move them unless they are in immediate danger
Note: Always consult a healthcare professional for personalised advice and management of epilepsy

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