With medication and by practising a healthier lifestyle, epilepsy patients can lead normal lives.
MOST of us go through life never having to face any major health issues.We grow up, graduate, get a job and prepare to start a new chapter in our lives. Like so many others, Christina too was on that happy path. But in 2009, when she was just 29, her life took a very different and unexpected turn.Despite having been healthy her whole life, she suddenly had an epileptic seizure at work.
“At that time, I was facing elevated challenges at work and the increase in stress levels coincided with the onset of my attack. I had never faced such an episode before,” says Christina.
Unfortunately, once epilepsy is triggered, the condition can’t be reverted. Initially, Christina was in denial, believing that the attacks wouldn’t happen again. But the next one came and it was worse than the last. This time, an ambulance was called to take her to the hospital. There, it was discovered that she had a left hippocampal sclerosis — scarring in the brain — which was the cause of her epilepsy.
But her difficult journey was just about to get tougher.After being diagnosed, Christina was referred to a hospital, where there weren’t any neurologists to 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.”
At that time, as part of her teaching requirement, Christina, a lecturer, was transferred to another branch. The change was challenging.On top of coming to terms with her diagnosis, doctors did not allow her to drive, and she struggled with the loss of independence and having to adapt to a new environment.
However, after time, the change became a blessing. At the new place, the staff were amazing and the students were very caring and Christina felt like she was part of a family.
Her attacks also became less frequent and milder. This made her realise the importance of a support system and an understanding community for people with epilepsy.
“When I am surrounded by positivity, I too become positive and that helps me face my challenges.”
It was also during this time that she met someone who led her down the right path in managing her epilepsy.
“I had one particularly bad attack during a training session at work, and a gentleman whom I had 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.”
The neurologist helped Christina to learn how to manage her condition, both physically and emotionally.It was a turning point for her. Not only was she finally referred to someone who could provide her with adequate treatment, but Christina also started to recognise that there were many others in a similar situation and they too had to make many sacrifices in managing their condition.
Of course, she had already read up on epilepsy and knew that it affected many people but meeting another person with the same condition had a great impact on her. Meeting that gentleman who had successfully faced his condition gave her hope that she could too.These days, when she does have an attack, it’s usually rather mild. She just rests for a bit and nobody can even tell that she has had an attack.
The medication she’s been taking has helped her manage her epilepsy and she doesn’t faint or black out anymore.However, she’s aware that she has to take charge of her condition in other ways too — by practising a healthier lifestyle and not burdening herself with too much work or stress.
Christina has learnt to accept and manage her condition and move forward with her life.
“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 normal lives. I have very supportive siblings that understand my condition but often, I find it difficult to talk about it openly with others.”
Christina says many people struggle to fully comprehend her situation, and a lack of understanding also brings the danger of judging and stigmatising people like her.Even the gentleman at work who helped her get help, made her promise that she wouldn’t tell anyone about his condition.
“But here lies the complication — how can we then expect others to be able to comprehend something they aren’t aware of? That is why I chose 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.”
Christina stresses that epilepsy patients can most definitely lead normal lives. She herself has managed to complete her master’s degree and has been working as a lecturer for over 10 years.She has learnt to adapt to her condition, understanding that she has to adhere to a lifestyle that she can manage.She says 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 Christina, her neurologist arranged for her to see a psychiatrist. The sessions helped a lot as she could talk about her challenges, how she felt and what she was going through.
Christina believes patients can benefit a lot through counselling, especially when going through the more challenging phases of epilepsy.
“For me, 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.”
People with epilepsy need support and understanding from society. Picture from: avenuescounselingcenter.org
APPROXIMATELY 50 million people suffer from epilepsy worldwide, according to the World Health Organisation, and 80 per cent of its prevalence are found in low and middle income countries, including Malaysia.
It is estimated that epileptic patients make up one per cent of the overall Malaysian population, with an estimated 230,000 diagnosed cases, affecting individuals of all races, ages and gender.Despite this prevalence, a significant lack of awareness of the condition has resulted in often negative — and in extreme cases — malevolent connotations, with epilepsy being associated with individuals who are spiritually possessed.
Epilepsy is a neurological condition where a person experiences multiple and recurrent seizures. These seizures are uncontrollable and the result of 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. With recent advances in treatment and medical understanding of the condition, patients suffering from epilepsy can lead very normal lives.
A MISUNDERSTOOD CONDITION
THE word epilepsy comes from the Greek verb epilepsia, which means to take hold of or to seize.
Throughout history, all over the world and in various different cultures, epilepsy has been the subject of many misconceptions.
It is not difficult to understand why the disease, with its sudden and dramatic seizures was seen as a strange and almost mystical condition.
People with epilepsy were viewed as being possessed by the devil or evil spirits and this sadly, affected society’s attitudes towards people with the disease. Generally, people with epilepsy were viewed with fear, suspicion and misunderstanding, and were subjected to enormous social stigma.
They were treated as outcasts and even punished.There was even a belief that epilepsy was contagious and people used to spit at a person with the condition or refuse to use the same utensils as them.
However, despite this stigma and mistreatment, many famous people in history who suffered from the condition went on to achieve great things. These include Julius Caesar, Czar Peter the Great of Russia, Pope Pius IX, the writer Fyodor Dostoevsky and the poet, Lord Byron.
Source: Adapted from “History of Epilepsy” — www.epilepsy.caSidebar
MANAGING A SEIZURE
Make sure the person is in a safe place.
Note the time the seizure starts.
Stay with them.
Cushion their head with something soft
Put them into the recovery position once the seizure has stopped.
Stay with them until they are fully recovered.
Call an ambulance if the seizure lasts more than five minutes.
Put anything in their mouth.
Hold them down.
Try to move them unless they are in danger.
Give them anything to eat or drink until they are fully recovered.
Attempt to bring them around.
Sources: www.epilepsysociety.org.uk, ww.epilepsy.com and www.epilepsy.org.uk
FACTS ABOUT EPILEPSY
* It isn’t contagious.
* It is one of the most common neurological disorders and affects people of all ages. It is not a rare condition. *It is a spectrum condition with a wide range of seizure types and control varying from person-to-person.
*Most people with epilepsy can do the same things that people without epilepsy can do. However, those with frequent seizures may not be able to work, drive, or may have problems in other parts of their life.
*Epilepsy cannot be cured
* A person can die from epilepsy. While it doesn’t happen frequently, epilepsy is a very serious condition and individuals do die from seizures.
Those with frequent seizures will be advised not to drive. Picture from: cdldrivingacademy.com