Approximately 50 million people suffer from epilepsy worldwide, with 80% of its prevalence found in developing countries, including Malaysia.
It is estimated that epileptic patients make 1% of the overall Malaysian population, with an estimated 230,000 number of diagnosed cases, affecting individuals of all races, ages and gender.
Despite this prevalence, a significant lack of awareness in the condition has resulted in often negative–and in extreme cases–malevolent connotations, with epilepsy being associated with individuals who are spiritually possessed. Read on to learn one individual’s epileptic journey–Christina–and how she overcame the stigma associated to the condition.
What Is It?
Epilepsy is a neurological condition where a person experiences multiple and recurrent seizures that occur in the brain. Seizures are uncontrollable, sudden changes in the brain’s electrical activity, which are commonly associated with convulsions (when a person’s body shakes rapidly, without control). However, not all seizures result in convulsions, with symptoms widely ranging in severity. However, recent advances in treatment and medical understanding of the condition, patients suffering from epilepsy can lead very normal lives.
Tackling Epilepsy
Christina, a lecturer with over ten years of experience, shares with us her personal challenges of epilepsy and how she overcomes them to lead an ordinary life.
“When I was 28, I was helping my parents out with Christmas preparations. Suddenly, without warning, I fainted. I assumed it was due to me being exhausted with the holiday preparations. I had no idea that I just had my first epileptic seizure. The second time, my epileptic seizure happened at work when I was 29 years old. I had been facing elevated challenges at work and the increase in stress levels coincided with the onset of my epilepsy attacks. I had never faced such episodes before.”
She added that, “Unfortunately, once epilepsy is triggered, the condition can’t be reverted. I remember being in denial, believing that the attacks wouldn’t happen again. But the next one came, and was worse than the last – this time, an ambulance was needed to take me to the hospital. There, it was discovered that I have a left hippocampal sclerosis – scarring in the brain, which was the cause of my epilepsy.”
Challenges That Were A Blessing
“After being diagnosed, I was referred to a hospital where there weren’t any neurologists to help recommend the best course of treatment. I was passed from doctor to doctor, and for quite some time, I found that getting the right help was tough.
“As part of my teaching requirement, I was transferred to another branch. This change was challenging; on top of coming to terms with my diagnosis, the doctors did not allow me to drive, and I struggled with the loss of independence and having to adapt to a new environment.”
A Good Support System
Christina said over time, the attacks were less frequent when she developed a solid support system that consisted of family, friends, colleagues and her university students.
“It was during this time I met someone who led me down the right path to managing my epilepsy. I had one particularly bad attack during a training session at work and a gentleman that I have never met before approached me afterwards. He told me that he too used to experience epileptic seizures and he passed me details of a neurologist who has helped me significantly with learning how to manage my condition, both physically and emotionally.”
Finally being acquainted with the professional help she needed and meeting another person who also had epilepsy was certainly the icing on the cake for Christina.
“Today when I have an attack, it is rather mild – I would rest for a bit and nobody would be able to tell I had an attack. This is how the medication has helped me; I don’t faint or black out. However, I understand that I too must take charge of my condition, by practicing a healthier lifestyle and not burdening myself with too much work or stress.”
Epilepsy Does Not Define Me
“Before being diagnosed, I had a rather vague idea of what epilepsy was. I didn’t know that it could be treated through medication and that patients could live a normal life. I have very supportive siblings that understand my condition, but often I find it difficult to talk about it openly with others – I find people struggle to fully comprehend my situation and a lack of understanding also brings a danger of judging and stigmatising others.”
“But here lies the complication – how can we expect others to be able to comprehend something they aren’t aware of? This is why I choose to share my story, so that people can be aware of epilepsy, to understand that epilepsy does not define a person, it doesn’t define me.”
Accept And Move Forward
“My advice is in addition to the medication, it is crucial for patients to accept their condition and share the challenges they face. When things got difficult for me, my neurologist arranged for me to see a psychiatrist. This helped me as I could talk about my challenges, how I feel, and what I am going through. I believe patients can benefit a lot through counseling especially when going through the more challenging phases of epilepsy.”
“For me, I think it is about living life to the fullest, to wake up and smell the roses. Yes, epilepsy comes with its own set of challenges and sacrifices, but I choose to look at the bright side and strive for the best”.
This article is an initiative by GlaxoSmithKline Pharmaceutical Sdn Bhd.
References
- Current Status of Epilepsy in Malaysia And Way Ahead, 2014
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- Mayo Clinic. (2018).Epilepsy -Symptoms and causes. [online] Available at:https://www.mayoclinic.org/diseases-conditions/epilepsy/symptoms-causes/syc-20350093 [Accessed 12 Mar. 2018].
- Epilepsy Society. (2018).Epilepsy in childhood. [online] Available at: https://www.epilepsysociety.org.uk/epilepsy-childhood#.WqYxdaiWaM9 [Accessed 12 Mar. 2018].
- Epilepsy Society. (2018).What is epilepsy?. [online] Available at: https://www.epilepsysociety.org.uk/what-epilepsy#.Wp0aGqiWaM8 [Accessed 12 Mar. 2018].
- Mayo Clinic. (2018).Seizures -Symptoms and causes. [online] Available at: https://www.mayoclinic.org/diseases-conditions/seizure/symptoms-causes/syc-20365711 [Accessed 12 Mar. 2018].
- Medlineplus.gov. (2018).Seizures | MedlinePlus. [online] Available at: https://medlineplus.gov/seizures.html [Accessed 12 Mar. 2018].
