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

Till the age of 28 Sheikh Imran was a ldquonondisabledrdquo person He worked with a USbased 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 cityEpilepsy is not a disability in IndiaBut Imranrsquos 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 downAkanksha 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 PicNimesh DaveWhile Imran now 31 says that he feels strong and has adapted to life with a highlevel disability doctors remain uncertain about the likelihood of his recoveryThis is an extreme example of the kind of impact epilepsy can have on onersquos life Imran says ldquoI was unfortunate to be alone on my apartment balcony when the seizure occurred with no one nearby to help merdquo But for many the condition itself is often left unchecked or not attended to promptly ldquoIf people understand this condition others can receive better care and support they needrdquo he addsDespite 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 realPooja Mehta Nandi and Dr Jayanti ManiFor instance actor Fatima Sana Shaikh who was diagnosed with epilepsy during the shooting of the 2016 sportsdrama film Dangal recently said that she was scared that she would not get work if her condition was knownShe spoke to Sunday midday about how her life with the condition has shaped her perspective on life and her career in filmsShe told us ldquoI have a lot more perseverance now Now itrsquos 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 itrsquos about facing what you consider challenges headon 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 strugglesrdquoldquoBut the realityrdquo she says ldquois that epilepsy looks different for everyone Therersquos no lsquoonesizefitsallrsquo experience and you can lead a normal life if you are cognisant Whatrsquos crucial is taking your meds on time regularly following up with the doctor and most importantly accepting that you have epilepsyrdquoFor many others the change was both emotional and professionalFourteen years ago Andheribased 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 tonicclonic seizure also known as grand malmdasha type of seizure that involves a stiffening phase tonic and a twitching phase clonicmdashwhich her husband witnessedPatankar told Sunday midday ldquoMy husband was terrified but made sure I didnrsquot hurt myself The seizures recurred and eventually I was diagnosed with epilepsyrdquoThe 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 pregnancyinduced form of epilepsyDr Jayanti Mani a neurologist at Kokilaben Dhirubhai Ambani Hospital tells Sunday midday ldquoThere are 40 different types of epilepsy each with its own set of symptoms and triggersrdquoPatankarrsquos case was an extremely rare one that occurs in just one out of 10000 persons with epilepsy Largely it affects 50 million people worldwide as per the World Health OrganisationBut Patankarrsquos resilience prevailed thanks to following strict instructions from her gynaecologist and neurologist ldquoAdhering to medical advice is crucial in managing epilepsyrdquo she saysHowever in order to manage career stress which was a significant trigger for her seizures she changed her profession to focus on her health and wellbeing on her neurologistrsquos advicePatankar says ldquoIt was the best decision for my health and happiness Irsquove been seizurefree for almost three years now and leading a healthier happier liferdquoHowever challenges are not limited to work alone Entrepreneur and neurodiversity advocate Pooja Mehta Nandi of Samman Association Mumbai Chapter of Indian Epilepsy Association says ldquoEducation 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 medicationrdquoNandi an epilepsy warrior herself says this reaction stems from a lack of awareness and understanding of the conditionThe WHO says 70 per cent of individuals can lead normal lives with proper medication and support ldquoHowever the remaining 30 per cent with severe epilepsy and comorbidities face greater challengesrdquo explains NandiEmployment and marriage are other areas where individuals with epilepsy encounter stigma and discrimination ldquoDisclosing onersquos condition can lead to job rejections and difficulties in forming relationships particularly for womenrdquo Nandi saysLack of firstaid knowledge is a fallout of the overall ignorance about the condition says Nandi ldquoMisguided actions such as forcing objects into the mouth or using strongsmelling substances can cause more harm than goodrdquo Nandi saysIn rural areas where stigma is more pronounced people still attribute seizures to supernatural causes Awareness is improving but therersquos a long way to go Nandi addsDuring 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 epilepsyrelated hospitalisations ldquoDespite there being no explicit policy patients are often denied coverage due to perceived high riskrdquo Nandi saysSo how can one foster inclusivity for individuals with epilepsy Dr Mani says ldquoOne 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 momentarilyrdquoWhile epilepsy cannot be cured it can be effectively managedDr Mani emphasises ldquoWith proper diagnosis and medication most individuals with epilepsy can lead full productive lives The key is early identification and treatment adherence However itrsquos important to note that even with medication itrsquos difficult to predict with absolute certainty whether someone will ever have another seizure Regular followups here are the keyrdquoDespite denial still being prevalent Dr Mani says ldquoOver 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 encouragingrdquoPiciStock7037Percentage of people who can control their seizures with antiepileptic drugs50 mnNo of people affected by epilepsy worldwideSource WHOWhat can you doBasic first aid for epileptic seizureDuring the seizure1 Stay calm2 Protect the person thinspCushion their head with something soft thinspMove sharp or hard objects away toprevent injury3 Do not restrainAvoid holding the person down or trying to stop their movements4 Turn them on their side Gently roll them onto their side recovery position to help keep their airway clear and prevent choking5 Loosen tight clothing Remove or loosen anything around their neck eg ties scarvesor collars6 Time the seizureNote how long the seizure lasts If it lasts longer than 5 minutes seek emergency helpAfter the seizure1 Stay with them Remain until they are fully awake and aware of their surroundings2 Comfort and reassure Speak calmly and reassure them as they may feel confused or disoriented3 Check for injuries Look for any injuries that may have occurred during the seizure4 Allow rest Let them rest or sleep if needed as seizures can be exhaustingWhen to seek SOS thinspIf seizure lasts longer than 5 minutes thinspIf second seizure occurs immediately thinspIf the person has difficulty breathing or waking up after the seizure thinspIf the person is injured pregnant or has diabetes thinspIf itrsquos their first seizure or yoursquore unsureThings to avoid thinspDo not put anything in their mouth thinspDo not offer food or drink until they are fully alert thinspDo not try to move them unless they are in immediate dangerNote Always consult a healthcare professional for personalised advice and management of epilepsy