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Daren&Tiff
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Thursday June 21, 2007
Living with epilepsy
Epileptics can enjoy quality life too, with proper medication and the right attitude.
WHEEL POWER by ANTHONY THANASAYAN
ONE of the things I enjoy most about writing this column is that I get to meet many interesting people. One of my newest friends is Serene Low who lives in Bangsar, Kuala Lumpur. Serene, 47, has epilepsy.
Epilepsy is a neurological disorder, which causes seizures. Medical experts say epileptic seizures are caused by over-activity of the brain cells, which produces a surge of electricity.
These seizures can be triggered by brain damage from injuries sustained at birth, head injuries, stroke, brain tumours and alcoholism. In many instances, the cause of epileptic seizures remains a mystery.
Serene, a housewife, is happily married with a 19-year-old son.
“I am the sixth child in a family of eight,” Serene wrote in her e-mail. “My mum had a difficult time taking care of so many of us. Because of that, she failed to notice my high fever when I was an infant.
“Eventually my parents saw me having convulsions and rushed me to the hospital. After a few days I was diagnosed as an epileptic.”
After that Serene experienced seizures every time she had a fever. The attacks came to a stop when she started schooling.
When she was 18, the seizures returned. The timing couldn’t have been more dangerous.
“I was swimming in the sea when I suddenly lost consciousness,” explained Serene. “My brother’s friend spotted my head bobbing up and down, from a distance. He pulled me out of the water. By then, my face had turned bluish purple.”
Serene was rushed to the nearest clinic where she was given medical aid. The doctor said she was very lucky to be alive.
Serene began making regular visits to the neurologist after that. She was put on medication to control the frequency of her seizures.
“Those early days were the most difficult for me,” wrote Serene.
“I felt my world crumbling before me. I was bitter and in despair. I threw away the medication, without my parents’ knowledge.”
During her college and working days, Serene said her friends and colleagues were terrified whenever they witnessed her epileptic attacks.
“Although many of them felt helpless, they tried their best to help me by placing spoons, T-shirts and towels in my mouth to prevent me from biting my tongue during seizures. It was also traumatic for my parents, especially my mum,” said Serene.
The turning point for Serene came when she learnt to accept her condition.
“Everything changed after that. Today, with proper medication, I lead a better quality life with minimal seizures.”
Serene learnt everything she could about her condition and went on to take charge of an epilepsy awareness booth at Atria Shopping Centre in Damansara Jaya, Selangor.
A member of the Malaysian Society of Epilepsy, Serene started an epilepsy support group more than three years ago.
Her mission: to continue with what she’s doing to help reduce public stigma towards epileptics.
“Epilepsy does not make me different from others; rather it is how differently others choose to see me,” added Serene.
Source: The Star paper (Thursday June 21, 2007)
Thursday August 2, 2007
Coping with epilepsy
WHEEL POWER by ANTHONY THANASAYAN
I CAME across a rather alarming report which said that people with epilepsy are three times more likely to commit suicide than the general population.
Featured on BBC Online recently, the report by Danish researchers in the Lancet Neurology study added that women with epilepsy were more likely to kill themselves than men with the condition.
The study, conducted from 1981 to 1997 by the Aarhus University Hospital team, called for greater efforts to control seizures, which could be stigmatising, and had many knock-on effects.
Even after taking into account factors such as mental illness, job status, income and marital status, people with epilepsy were twice as likely to kill themselves.
And people who had been diagnosed with epilepsy within the previous six months were more than five times more likely to commit suicide.
People with both epilepsy and a psychiatric illness were nearly 14 times more likely to commit suicide than people with neither condition.
The trend among the general population shows that the risk of suicide increases with age. But the researchers found that, in the case of people with epilepsy, the risk of suicide fell as they grew older.
The BBC report also pointed out that, once diagnosed with epilepsy, patients lose their driver’s licence and miss out on opportunities. Drug treatment may decrease fertility too.
One person with epilepsy who is clearly on top of the situation is Serene Low from Bangsar, Kuala Lumpur. The 47-year-old is doing a wonderful job raising awareness about her condition. Serene wrote to me recently to update me on what’s been happening in her life lately.
“I was at the Suntec Singapore International Convention & Exhibition Centre last month to attend a symposium for people with epilepsy and their care-givers.
“What an uplifting experience it was. I was in the company of people from all over the world who have epilepsy. We shared personal experiences and learnt about the latest news from the support groups,” wrote Serene.
There were about 200 participants at the symposium, and delegates came from as far as Argentina, Austria, Japan and New Zealand.
“International presenters spoke about how epilepsy affected the lives of children, adults and older persons.
“What impressed me most is the fact that many positive changes can be affected for people with epilepsy if support groups, government bodies and the corporate sector worked together to enhance the quality of lives for those living with epilepsy.”
During her stay in Singapore, Serene had the opportunity to catch up with two of her Filipino friends, Rose and Jeanne.
“Rose updated me on the progress of her epilepsy awareness work in Iloilo, a province in the Philippines,” explained Serene. “Rose educates public transport drivers, and people working in banks and shopping malls, about epilepsy and ways to help an epileptic in the event of a seizure.
“As a result of her untiring efforts, stickers such as ‘Epilepsy-Friendly Bank’ or ‘Epilepsy-Friendly Shopping Mall’ are being placed in areas where the Filipinos have taken their messages to,” said Serene.
“Jeanne also raised a pertinent point: she would like to see more financial sponsorships to enable people with epilepsy to participate in the conferences. I agree with her wholeheartedly.”
“It’s vital for people with epilepsy to make ourselves visible in society even though our condition is an invisible disability,” she added.
Source: The Star paper (Thursday August 2, 2007)
Thursday November 22, 2007
Epilepsy alert
WHEEL POWER
By ANTHONY THANASAYAN
Here is what you can do to help someone who is suffering an epileptic attack.
SHOPPERS who regularly patronise Wisma Atria in Damansara Jaya, Selangor, would have noticed a special booth near the main entrance of the supermarket. Every Sunday, visitors will find Serene Low at her stall from 11am to 6pm. She is there to talk to anybody who is interested in knowing more about epilepsy.
Epilepsy is a neurological condition which causes seizures. According to medical experts, epileptic seizures may be caused by a variety of factors, such as brain damage injuries at birth, head injury, stroke, brain tumour or alcoholism.
There is evidence to suggest the condition sometimes has a genetic basis, although this is rare. In many instances, however, the cause of the condition remains a mystery.
Low, who is close to 50, is passionate about the subject because she has the condition. Low was diagnosed with epilepsy as a child. During her teenage years, she used to have as many as two to three seizures a week. But daily medication has changed all that. The last time she had an epileptic attack was three years ago.
Today, Low uses every opportunity available to raise awareness about the disease. She wrote in recently to share some of the misconceptions that the public has about the condition.
“When an epileptic has a seizure, it is wrong and dangerous to insert a spoon into his mouth,” Low says. “People use spoons, towels, chopsticks and even their finger to stop the person from biting his tongue.
“However, these can cause serious problems like blocking the person’s air passageway instead of helping him,” she explains. “The best thing to do is to make the patient as comfortable and safe as possible, and allow the seizure to take its course.”
Low relates an incident at a restaurant when she had a seizure. She was with a couple of her friends.
“I lost consciousness and fell to the floor,” she says. “Everyone was horrified and did not know what to do. Then a tall, burly man used a spoon to forcibly pry open my clenched teeth. Several of my teeth were chipped as a result. I sustained a broken tooth too.”
The traumatic experience did not end there. The first dentist failed to give her enough anaesthetic to numb the pain, and she suffered agony during the surgery. She had to cough up RM500 for the shabby job.
The second dentist presented her with a RM8,600 bill ,which also covered the cost of a new bridge for her teeth. That took almost a month to make. Adjusting to a temporary plastic bridge was difficult too.
“I’m sure the kind gentleman who tried to help me would never have dreamt of the nightmare he put me through,” says Low.
Low offers the following steps to help someone experiencing a seizure:
# Note the time the seizure started and how long it lasted.
# Quickly remove any hard objects that could cause injury during jerking movements.
# Do not insert anything into the person’s mouth.
# Do not attempt to restrain the person or stop the jerking.
# Protect his head with something soft as best as you can. Use a pillow or cushion if available.
# Stay with the person until the convulsions stop.
# When the convulsions stop, gently roll the person onto his side, with the legs bent towards the torso. This is called the recovery position.
# Establish communication so that you know the person has regained consciousness.
# Reassure the person and let him know where he is. Tell him that he is safe and that you will stay with him until he recovers.
When to call an ambulance:
# When the seizure lasts five minutes or more.
# When the person has lost consciousness for five minutes or more.
# If another seizure starts shortly after the first one ends.
# When the person has sustained an injury.
# When you know or believe it is the person’s first seizure.
# If the seizure has occurred in water where drowning is possible.
# If you know the person has diabetes or is pregnant.
Source: The Star paper (Thursday November 22, 2007)
For more updates, please visit my blog:
epilepsylegacy.blogspot.com
Dear Daran & Tiff,
How do you do? My name is Trishna and I am writing from India, from organization called Aashwasan. I head the special projects division. We have done extensive work with children and would like to share that with you. However, I am nit able to find any contact details on your blog. Would be great if I could hear from you. I am at trishna@aashwasan.com or on skype: trishaash. Will look forward to hearing from you.
Warm Regards
Trishna
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