Today is International Epilepsy Day. The most significant problems people with epilepsy encounter in daily life often are not related to the severity of the condition but stem from misconceptions about epilepsy held by the public.
Tony* has lost count of the number of times he felt so weak he would have to lie down on the floor and lose consciousness, fists clenching and knees jerking.
He had his first seizure in 1984. He was 30 years old and had just lost a family member – the seizure would mark his life.
Sonia was diagnosed with partial epilepsy when she was just eight years old. Her condition leads to secondary generalised seizures, also known as tonic-clonic seizures.
Beyond the physical and mental suffering, stigma and exclusion are common and contribute to the burden associated with the condition.
International Epilepsy Day, being celebrated today, is an opportunity to lend a global voice to people with epilepsy, a disease that can have devastating consequences, affecting all aspects of lives of people with epilepsy.
According to the Epilepsy Foundation, there are around 65 million people living with the disease worldwide. In Malta, the estimate is of over 4,000 and the local prevalence rate, according to Josanne Aquilina, neurology consultant at Mater Dei Hospital, are comparable to that in other European countries.
Epilepsy is diagnosed when there are recurrent epileptic seizures in a person.
“In the primary epilepsies there are usually genetic factors predisposing to the condition,” she explained. “In the secondary epilepsies, the seizures occur as a result of a cerebrovascular accident, trauma, tumours, infection, congenital malformations or cerebral dysgenesis, alcohol or drugs.”
Epilepsy is a universal condition and knows no racial or geographical boundaries. Epilepsy often has profound physical, psychological and social consequences; seizures can cause misunderstanding, fear, secrecy, stigmatisation and social isolation.
Such social consequences are often informed by misconceptions – attitudes towards people with epilepsy are influenced, in part, by the extent of knowledge about the condition.
Reducing the stigma of epilepsy is key to reducing its impact and so improving quality of life. Many initiatives are under way to decrease the stigma and discrimination of people with epilepsy – research shows that such efforts are making a difference, but more needs to be done.
The Caritas Malta Epilepsy Association and its fellow organisations worldwide are needed to bring epilepsy out of the shadows and allow people with epilepsy to live in a society where attitudes towards the condition are based on fact not fiction.
‘Do not pity me’
As a young child Sonia started experiencing short periods of disorientation during which she lost all sense of time.
“I was around six or seven years old when my primary school teacher noticed I was staring at nothing. When she would call me to get my attention, I would not answer back. It was like I was on another planet for a few seconds,” she said.
The teacher also noticed that when she asked Sonia a question, it would take very long for her to answer. At first, she made Sonia sit in the front row so she could pay more attention. Later, however, she called Sonia’s mother to discuss these behavioural issues. Her mother decided to seek medical advice.
“My general practitioner referred me to a neurologist. After blood tests, examinations and consultations I was told I had developed epilepsy. Doctors said that it could have been triggered by a high fever episode when I was six.”
Sonia still finds it hard to accept her condition today.
“It influences the way I live. I try as much as possible to live normally but most of my life decisions have to be made according to my condition.
“It was very difficult on my family especially mum and dad – for years, I could not go out on my own without contacting them. They were very afraid that something would happen to me.”
Over the years Sonia has seen a remarkable range of reactions to her condition – from pity to curiosity, rejection and unquestioning acceptance.
“The only thing that really made me upset was when people pitied me, judged me and did not treat me like everybody else because I had a brain condition,” she said.
At first, she could not discuss her condition with her friends. But when Sonia got older, she had to because if she did not give her friends’ number to her mother, going out had to be shelved.
“I think it was the best thing to do. I had their full support and they could understand my condition.”
At 17, Sonia went through a difficult time – she was stressed, could not sleep and started experiencing tonic-clonic seizures. She lost all sense of direction in life.
“I was not prepared for it. I thought that with medicine and regular visits to my neurologists, my condition was under control.”
Sonia’s fighting spirit helped her change. Her neurologist gave her a better understanding of epilepsy and she learned to accept her condition as an illness that could be well controlled with proper treatment.
“I changed my medicine and did more frequent tests to adjust my dose. I started to fight because I wanted people to hear my story and help others with the same condition. I started to take part in groups which are focused on this condition and I shared my experiences with others with the same condition.”
Today Sonia is 26, in a relationship, and has graduated from Mcast. She works in the health sector which she believes is a benefit for her.
“My colleagues are aware of my condition and I have their support. They treat me normally, because they know there is nothing wrong with me.”
Tony had a family history of epilepsy: he grew up seeing one of his relatives suffering frequent seizures and convulsions but he never wondered what was going on.
After a battery of tests and neurologist appointments, Tony’s electroencephalogram showed a temporal lobe abnormality and was diagnosed with absence seizures, which were happening up to three times daily.
Over the years, Tony tried several anti-epileptic drugs with no significant improvement. Repeat electroencephalography and magnetic resonance images showed no abnormality.
Two decades later, in 2003, he took the very brave step to undergo temporal lobe surgery. His underwent an eight-hour intervention at a London hospital. The results of the operation surprised his family and friends.
Tony’s epileptic seizures were caused by a blood clot. In the beginning, and even though Tony was no longer suffering from seizures, he continued to take epilepsy medication for a few years and his progress was carefully monitored.
Today, Tony is seizure-free. His frequent nightmares are gone and his daily life, at 63 years, is much easier.
“I am proud to say I was born again in September 2003,” he said. “Epilepsy has changed me as a person. It taught me more than any university possibly could.”
A mother’s story
Maria’s nine-year-old son, Adam, has epilepsy.
“The first night I saw my three-year-old son having a seizure, I knew what it was but I had no idea what to do,” she said.
“My husband rushed him to the nearby health centre where we were told that one seizure did not mean Adam had epilepsy and that in fact, he might never have another seizure again.”
Unfortunately, a few weeks later, he suffered another seizure, meaning that he did indeed have epilepsy.
The first drug helped for a while but then Adam suffered more seizures, ranging from minor ones to tonic-clonic seizures.
“His medication had to be changed and we needed to spend almost a week in hospital as his seizures increased during this change. He was fairly stable for a while and then again we had to make some changes.
“We learned that there are changes in seizures – we would feel like we had everything figured out and then Adam would suffer a different seizure and we would be once again swimming in a new pond.”
Because of the frequent bursts of electricity in his brain, Adam has struggled with learning difficulties. It is hard for him to stay focused and concentrate and his memory is also affected.
“This does not mean that he is not intelligent – however, his learning style is different. We had problems with this in the State school system. I will be the first to say that our other children have had a very good experience in State schools and as the daughter of a school teacher I realise all the challenges and sacrifices our teachers make. However, with Adam, it was as if he was sinking into a deep pit and he was being offered a hand when what he needed was a rope.”
After several months of fairly severe problems with stress seizures and panic attacks, Adam’s parents decided to find an alternative for his schooling. They enrolled him in a new private school with smaller classrooms and individualised attention, where he is making great progress.
Adam also has different emotional needs. “However, we are learning to deal with it as a family,” Maria said.
“His older siblings have been terrific with him and know how to help him when he is having trouble.
“We try to keep regular appointments with our excellent doctors and keep reading about new developments in epilepsy. Having friends at the Caritas Malta Epilepsy Association has also been a blessing.”
* Names have been changed to protect interviewees’ identities.
Independent journalism costs money. Support Times of Malta for the price of a coffee.Support Us