ORIENTAL DAILY NEWS ( MALAYSIA )
ORIENTAL HEALTH SECTION

Interview by Miss Tanky Chow on 4 January 2008

Topic : Serene Low's Colorful Lifestyle
Her Struggles to Accept Epilepsy As Part of Her Life
Her Career and Ambitions
Her Epilepsy Awareness Work ( Her Mission In Life )
Her Triumph Over Epilepsy & Her Most Supportive Husband and Son

Please click on the image to enlarge

Please click on the image to enlarge

Quakes hold clue to predicting epileptic fits

“The pattern implies that past seizures affect future ones, casting doubt on the idea that they happen at random”

THEY both start with tiny, barely perceptible tremors that lead up to a cataclysmic climax – and now it seems that the similarities between earthquakes and epileptic seizures run deep. Seismology could even hold the key to new ways of predicting and avoiding epileptic fits.

A team led by neurologist Ivan Osorio of the University of Kansas in Kansas City compared the brain activity in 16,000 epileptic seizures with seismological data from 300,000 earthquakes. The team concludes in a non-peer-reviewed report (www.arxiv.org/abs/0712.3929) that the dynamics of the two kinds of event are very similar (see Diagram).

There are several striking features in common. Low-level tremors that foreshadow full earthquakes, for example, are mirrored by tiny neural spikes in the brain’s electrical activity before a seizure. Just as the lowlevel tremors were undetectable except with seismographs, so the neural spikes go unnoticed by patients but are measurable through scans of brain electrical activity.

Likewise, Osorio and his colleagues say that the patterns of “waiting times” were similar for earthquakes and seizures. Counter-intuitively, the longer the wait since a previous quake or seizure, the longer it is likely to be till the next one. Similarly, a “cluster” of quakes is usually preceded by only a short wait.

This pattern implies that past earthquakes – and seizures – affect future ones, casting doubt on the idea that they happen at random (New Scientist, 14 June 1997, p 19). “This suggests a novel research direction for the prediction of seizures based on the notion that seizures beget seizures,” write the researchers.

Osorio’s team traces the idea that quakes and seizures share the same dynamics back to 2002, but the paper is the first to demonstrate an element of predictability in seizures. As with earthquakes, they found that seizures are governed by “power laws”, which often link superficially random events. In seismology, power laws describe the relationship between the magnitude of individual quakes and the frequency with which quakes of that magnitude occur, or the delay times between quakes.

Power laws also describe phenomena as obscure as the time taken to respond to emails, so the fact that they show up with quakes and seizures is not in itself surprising. But with seven separate power laws showing up in the data from both earthquakes and seizures, parallels between the phenomena are hard to ignore.

The discovery may bring us closer to predicting and preventing seizures, Osorio’s team concludes – a key goal of neuroscience. “It’s an attractive concept,” says Matthew Walker of the experimental epilepsy group at University College London’s Institute of Neurology. “A good predictive method could revolutionise people’s lives,” though he cautions that the team has yet to show that its method can provide this. Jason Palmer

Source: media.newscientist.com

Radio Interview by Tan Su Lin (in Bahasa Malaysia)

On the evening of 10 December 2007 I received a telephone call from a lady by the name of Su Lin. She introduced herself as a radio journalist from Bernama News 93.9Fm station. She read an interesting epilepsy article that was published in The Star paper on 22 November 2007. The article was written by my friend (Anthony Thanasayan of Wheel Power Column, The Star Paper) and me.




Su Lin was very keen to find out more about epilepsy and thought it would be educational to broadcast information concerning epilepsy in the air. We arranged to meet on the following day to talk more about epilepsy. I was very pleased to be able to share with Su Lin a broader spectrum of epilepsy covering Epilepsy and Employment, Epilepsy and Driving, Epilepsy and Pregnancy, Myths and Misconceptions of Epilepsy and (AED) Anti Epileptic Drugs And Side Effects. " I know so little about epilepsy. The term itself is so new to me. I am sure a lot of people are unaware or know very little about what epilepsy is and issues relating to social stigma, myths and misconceptions that can complicate, impair and cripple lives of PWE (People With Epilepsy) and Caregivers" commented Su Lin.


Su Lin recorded my interview on 11 December. On 14 December morning news about "What Is Epilepsy And How It Affects People With Epilepsy" were aired repeatedly and intervally over Bernama News Radio 93.9Fm station for the whole day.


14 December 2007's radio broadcast had added a milestone to my epilepsy awareness work. God is at the helm of my life and work. I pray for more radio interview opportunities to come in the near future.

AWARENESS, ADVOCACY AND EMPOWERMENT WILL BRING ABOUT POSITIVE CHANGES AND IMPROVEMENTS IN THE LIVES OF PEOPLE WITH EPILEPSY (PWE) AND CARERS

(this is the text of my radio interview in Bahasa Malaysia [Malaysia's national language])

Orang ramai yang biasa mengunjungi Wisma Atria di Damansara Jaya, Selangor pastinya tidak akan terlepas pandang kehadiran sebuah gerai istimewa yang bukan menjual makanan ataupun barangan tetapi memberi nasihat secara percuma mengenai epilepsy.

Wartawan Radio24, Tan Su Lin melaporkan bahawa Serene Low, seorang individu yang membuka gerai itu setiap hari Ahad dari pukul 11 pagi hingga 6 petang memberi informasi dan nasihat secara percuma kepada sesiapa yang berminat mengetahui dengan lanjut tentang epilepsy.

STORY BJ:

Epilepsy ialah nama bagi sejenis penyakit disebabkan gangguan dalam bahagian otak yang boleh berulang dalam bentuk serangan sawan, melibatkan lebih kurang 50 juta orang dari semua peringkat umur, terutamanya dalam peringkat kanak-kanak, remaja dan warga tua.

Bagi kebanyakan kes, tiada punca sebenar bagi epilepsy yang diketahui tetapi antara faktor yang mungkin menyebabkan epilepsy ialah penyakit keturunan, kecederaan otak sewaktu kelahiran, kecederaan parah di kepala dan ketumbuhan di otak.

Serene Low, 47 tahun yang menghidap penyakit epilepsy sejak berumur 3 tahun, kini menjalani hidup yang stabil atas bantuan ubat-ubat yang diambilnya setiap hari. Beliau berkongsi anggapan palsu mengenai cara mengendali serangan sawan epilepsy. Antaranya adalah tindakan cuba menahan pesakit daripada bergerak dan membuka mulut atau meletakkan sebarang objek dalam mulut pesakit.

SB_MISCONCEPTION

Disebabkan keadaan penghidap epilepsy atau people with epilepsy, PWE boleh diserang sawan bila-bila masa, ramai di antara mereka yang tidak mempunyai pekerjaan. Menurut Serene Low, PWE perlu diberikan hak seperti orang biasa untuk bekerja dan berharap orang ramai berfikiran terbuka tentang epilepsy bagi mengurangkan stigma sosial penghidap epilepsy.

SB_NEEDS

Menurutnya lagi PWE adalah seperti orang normal dan harus diberikan peluang untuk bekerja malah mereka boleh menjadi produktif dan memberikan hasil kerja yang berkualiti.

SB_JOB

Serene Low berkata satu persefahaman dan persetujuan perlu dicapai antara penghidap epilepsy dan majikan di tempat kerja, agar majikan memahami keadaan penghidap epilepsy dan mereka dapat bekerja dengan baik.

SB_HOWJOB

Antara tips bagaimana hendak menangani serangan sawan adalah jangan panik, baringkan pesakit tersebut di tempat yang selamat dan alaskan sesuatu yang lembut dibawah kepalanya, jangan biarkan orang mengerumuni pesakit: ini menyebabkan pesakit mendapat kurang oksigen, jauhkan objek-objek tajam yang ada berhampiran, jangan meletakkan apa-apa objek dalam mulut pesakit (termasuklah jari anda) kerana ini boleh mencederakan anda, gigi pesakit boleh patah dan objek itu boleh menghalang saluran pernafasan. Dan adalah mustahil untuk pesakit menggigit putus lidahnya kerana lidah merupakan otot yang kuat dan ia mudah sembuh. Jangan cuba menahan atau mengikatnya dari bergerak dan hubungi pihak ambulans jika serangan sawan melebihi 5 minit.

Radio24 akan mendapatkan maklumat lanjut mengenai epilepsy daripada pakar neorologi.

Tan Su Lin melaporkan untuk Radio24 (Tan Su Lin reports for Radio24).

Bells Jingled At Epilepsy Support Group Gathering

Updated: 09-01-2008, 03:44:50


Christmas is a time to be jolly and merry. It is also a time to bring cheer, joy and meaning to others. Members of the epilepsy support group under the guidance of Dr K S Lim were supposed to have their year end once-a-month meeting in University Hospital, also known as, University Malaya Medical Centre (UMMC) on the 5th Floor at 2pm on Saturday, 29th December 2007.


Since the meeting date had fallen on a day sandwiched between Christmas and Happy New Year, I thought it would be ideal to seize the opportunity to celebrate belated Christmas with my fellow members in the support group. Dr Lim was in favour of my idea too.


The day came and all of us met on the 12th Floor of Menara Utama, UMMC. I invited my friends, five of them, all members of Lions Club of PJ Metro to join in the gathering too. I personally deemed it appropriate to introduce my Lions friends to members of the support group as well as Dr Lim. Lions Club of PJ Metro also has an epilepsy project as one of its various types of community services to members of the public. Shirley and Terry, the chairperson of epilepsy division had read about Dr Lim's recent interview in Sin Chew Jit Poh Chinese press concerning epilepsy. They wanted to meet Dr Lim in person and also to find out more about epilepsy.


There were about 30 of us in the Christmas gathering. Terry, also the guitarist together with his Lions friends played and sang Christmas carols to the delightfulness of everyone. We sang and clapped along to the lively tempo of evergreen Christmas carols. Jason who is 15 years old, an autistic, sang joyfully and clapped excitedly to the beat of Jingle Bells.

Epilepsy Support Group Members

Four trainee doctors on the left with two Lions Club members on the right

After the singing session, Dr Lim made all of us sit in a circular arrangement. He wanted everyone to play "PASS THE PARCEL AROUND" game. The music started and stopped intermittently. Ten members (the ones who had small gifts in their hands after the music stopped) were asked and challenged to display funny cute poses, tell a story and share a joke.

Cute poses, tell a story and share a joke session

A caregiver telling everyone her hopes for the new year

With the year coming to an end, all of us were asked to voice our hopes for the new year to come. I had hoped the support group will grow strong in membership strength. I highlighted the saying that went like, "A ship with only a good captain on board will not be able to set sail but a ship with a team of dedicated and hardworking crew on board will set sail and complete its voyage successfully.


I also urged the members to be epilepsy ambassadors. Everyone has a role to play actively when it comes to spreading words/information regarding epilepsy. Discussions are not to be confined within the four walls of the meeting room only. Knowledge about epilepsy ought to be shared and spoken frequently like an everyday language of PWE (People With Epilepsy).


Light refreshments were provided by Dr Lim and members as well as Lions Club of PJ Metro members. We had an array of food in abundance. It was indeed a great Christmas blessing we acknowledged as coming from God. While we cope with our epilepsy and caregivers attempt to do and provide the best care for their children, we must take comfort that in various and assorted ways majority of us fare better in living a normal life (minimal seizures controlled with medication) compared to people who are stricken with incurable and life taking ailments like lupus, HIV Aids and terminal cancer.

HAPPY NEW YEAR 2008 to everyone! May the year 2008 signify a good, eventful and fruitful year for PWE and caregivers here and everywhere in the world.


Article written by Serene Low

Sean Paul song gave her seizures

BY RICHARD WEIR
DAILY NEWS STAFF WRITER

Friday, January 18th 2008, 4:00 AM

Certain songs really got to Stacey Gayle - and she had surgery to make them stop.

For four years, Gayle, 25, who has epilepsy had unpredictable epileptic seizures despite taking a regimen of medications. Then in 2006, she figured out that music, and specifically Sean Paul's chart topper "Temperature," could set off the attacks.

"I don't know why Sean Paul was giving me seizures," she said Thursday at Long Island Jewish Medical Center in New Hyde Park, where she underwent the operation. "But as soon as the beat came on, it just triggered a seizure. I'd go somewhere and I'd be like, 'Don't play that song!'"

She later discovered that other tunes, including Rihanna's "Umbrella" and Sean Kingston's "Beautiful Girls," could do the same. Gayle, who lives with her mom in Rosedale, Queens, had to quit her Manhattan job as a bank customer service rep, drop out of college and stop going to church - where she sang in the choir.

Tired of living in fear, she sought out Dr. Ashesh Mehta, a neurosurgeon and director of epilepsy surgery at the medical center.

Mehta said at first he was skeptical of Gayle's claims.

"It's extremely rare," Mehta said of "musicogenic" epilepsy. "There are only 50 to 100 cases ever reported of this disorder."

But he was convinced after Gayle gave herself a seizure by listening to Paul's song.

On Oct. 3, doctors removed a 3-inch portion of her right front temporal lobe, the same area that processes music.

The operation worked. Gayle said she has returned to singing in her church choir and attending York College, where she is studying to become a teacher. She said she waited a month after her surgery before she worked up the courage to listen to "Temperature."

"I think his music is awesome," she said. "Now I can see why everyone liked this song."

rweir@nydailynews.com

Source: New York Daily News

Top of Form

Martial Arts Program for Children with Epilepsy

16th Jan 2008 by Shelley Narula

Psychosocial consequences in children living with epilepsy are significant. Frequent hospitalization, the unpredictability of seizures, and side effects from treatment can lead to increased stress for the child and the entire family. They can lead to child’s negative evaluation of self and can affect the child’s ability to meet his or her potential in both academic and social settings.

Researchers conducted a pilot study to assess the effects of a martial arts program on children with epilepsy. A series of 10-week, 1 hour/week Kempo karate form classes were offered to children aged 8-16 years. Quality of life, self-concept, and parental anxiety were assessed through questionnaire measures. The two parental questionnaires issued were the Parental Stress Index Short Form, assessed stress in the parent/child dyad, and the Quality of Life in Childhood Epilepsy inventory, assessed a child’s day-to-day life functioning over five domains of health-related quality of life. The one questionnaire completed by the children was the Piers-Harris Children’s Self-Concept Scale 1, an 80-item questionnaire with a yes/no response format, designed to assess self-concept in children and adolescents.

It was interesting to know that karate program was an effective intervention. Positive trends were observed across all domains of health-related quality of life for children with epilepsy, particularly relating to parental perception of the impact of their child’s anxiety, behavior, socialization, attention, and concentration. The parents also perceived a significant improvement in their child’s quality of life relating to memory function. Children participating in the karate program reported an enhanced self-concept with regard to their intellectual and school status. Although the karate program for children with epilepsy may have had a small effect in reducing parental stress, the change was not significant. Attention to parental anxiety and family coping strategies should be a focus of future psychosocial interventions.

Karate training emphasizes self-discipline and self-control. Peer admiration and positive reinforcement through shared achievements in the karate class may also contribute to a more positive sense of self. It simulates a constructive learning environment. The peer group aids in removing the stigma of “other” and normalizing the shared experience of epilepsy. Emphasis on the relationship to a mentor, the karate instructor, encourages positive reinforcement within a supportive learning environment. The significant improvement in intellectual self-concept and school status as reported by the children in the above study prove the potential benefits associated with a karate program.

Reference

Kerry D. Conanta, Amy K. Morganb, David Muzykewicz et al. A karate program for improving self-concept and quality of life in childhood epilepsy: Results of a pilot study. Epilepsy & Behavior 2008;12(1):61-65.

Taken from: Brainblogger.com

The Two Men Who Make My Epileptic Life Complete

Behind a man's success is a woman. In my special case, I have two men behind my achievements in my epilepsy awareness work. My out of the world (best) husband supports me relentlessly in every aspects of my life and work.

Cheong (my husband) fares a lot better in accepting my epilepsy in comparison to me. I have a tendency to forego my medication. My husband's biological clock is so accurate and the alarm rings right on time everyday telling me to take my medication.

Cheong is also very committed towards my epilepsy awareness work. He drives me to meetings, sponsors me to attend epilepsy conferences, donates towards my epilepsy fund, helps to set up my booth for epilepsy awareness work on weekends and the list goes on.

My son Edmund is a very obedient and hardworking person. He dedicates a lot of his time at my epilepsy awareness booth. He helps in disseminating epilepsy information to members of the public. At home, he manages my epilepsy blog, do home chores and cook dinner when I am still in meetings.

These two men are more valuable than pearls and precious gemstones found everywhere in the world. They see my sufferings and share my pain. They lift me up when I am down. They add sparkles to my life. They are like a rainbow over my head. They are my everything. We are a family of three working hand in hand, interlocked and intertwined in efforts to bring about a brighter tomorrow for people with epilepsy and caregivers.

I thank God unceasingly for making my life extremely worthy and meaningful with His great providence in the form of my husband and son.

6th Asian & Oceanian Epilepsy Congress

6th Asian & Oceanian Epilepsy Congress

Feedback on Asian Epilepsy Congress (AOEC)

6TH ASIAN & OCEANIAN EPILEPSY CONGRESS (AOEC) (AOEA - PATIENT PROGRAMME) 15TH NOVEMBER - 17TH NOVEMBER 2006

Written by: Serene Low

First and foremost, I would like to say "Thank You" or "Terima Kasih to Persatuan Epilepsi Malaysia and UCB Pharma Asia Pacific Sdn Bhd for giving me an opportunity of a lifetime to attend epilepsy patient programmes organised in conjunction with the above congress. I was one of seven privileged Malaysian participants to have attended AOEA. Of the seven participants, six of us met on 4th November, a Saturday afternoon, to brief and discuss what AOEA is about.

Day 1
On 15th November, seven of us turned up at KLCC Convention Centre to register for AOEA. Upon registration we were given our name tags and bags containing materials relevant to our programmes. Most of us quickly browsed through the materials and then we adjourned to a food court which is located on the 4th floor of KLCC Convention Centre. We had some light refreshment while waiting for the first event of AOEA to start.

At 6.30pm, we congregated at the main entrance of KLCC Convention Centre (on the Jalan Pinang side) together with participants from Singapore, India, Indonesia, Taiwan, Mongolia, Hong Kong, Japan, Philippines and Thailand. There was a huge crowd of participants and within minutes, we were quickly ushered into coaches waiting to take us to Lake Titiwangsa.

At Lake Titiwangsa, all participants were being directed to Nelayan Restaurant. At 8.00pm, Persatuan Epilepsi Malaysia's president, Dr Hussain Imam Mohammad Ismail gave a short welcome speech and wish all of us "Happy Dinner". I sat at a table together with Taiwanese and Singaporeans. While enjoying our dinner, we quickly introduced ourselves and exchanged name cards. The main language used by the participants at our table was Chinese. Although I am an English educated person, I was able to mix well and spoke Chinese with my foreign friends. We were a happy group of friends and we also enjoyed our food a lot. We left Lake Titiwangsa at about 9.45pm and returned to KLCC Convention Centre at 10.15pm.

Serene Low (center) with four of her Malaysian delegates

Informal welcome dinner with Singaporean delegates

Day 2
This was our most tiring day of AOEA. Talks started at 9.00am and ended at 5.30pm. In between talks we had two coffee breaks and a delicious buffet lunch.

Patients and caregivers participated actively with questions that were tactfully answered by panels of invited doctors. I especially liked the programme concerning "Outstanding Persons With Epilepsy" from six countries. These people gave testimonies on their encounter with epilepsy and conquering it. I was very motivated and touched by their stories. An epilepsy patient myself, I can feel and understand these peoples' emotions and problems better than non sufferers.

Another programme I appreciated a lot was the two DVD presentations. The first DVD show was presented by the Taiwan Epilepsy Association entitled "The Moment I Lost Myself" followed by the second show presented by Hong Kong Epilepsy Society entitled "Demystifying Epilepsy - Educational Kit on Epilepsy".

At 6.00pm we witnessed the opening ceremony of the 6th AOEC. The first speaker was IBE President, Susanne Lund followed by four more speakers who gave their short welcome speeches. After the speeches there was a local dance performance organised by the Malaysia Tourism Board. My Taiwanese and Singaporean friends were impressed with the dances and the dancers' colourful and beautiful costumes.

At 7.00pm all delegates and participants were given a welcome reception. We all had a sumptuous dinner and went home feeling tired but happy with all the useful knowledge we had acquired throughout the day.

Welcoming delegates on behalf of host country (Malaysia)

Day 3
After a long and tiring day yesterday, we all looked forward to this day of social outing. Coaches picked us up at 10.00am at the KLCC Convention Centre's main entrance and left for Putrajaya (the new Malaysian capital).
Ms Jennifer Chen, president of the Taiwan Epilepsy Association sat beside me. We exchanged information concerning epilepsy on an NGO level as well as personal level. By this day, both of us had become good friends. I am very glad to have found another new friend as a resulf of attending AOEA.

We arrived at Putrajaya slightly past eleven and walked a short distance to board air-conditioned tour boats for a cruise around Putrajaya Lake. It was my first time to cruise round Putrajaya Lake and the sights and views of Putrajaya buildings (mosque, bridge, government offices and hospital) were beautiful and artistic. We also had a guide in our boat who explained to us briefly about the sights surrounding us.

After the cruise, we were treated to a buffet lunch in a restaurant by the Lake. It was a nice experience to be able to enjoy our lunch comfortably and at the same time surrounded by beautiful scenery. At around 2.00pm we boarded the coach for a short tour around Putrajaya taking in more wonderful sights. We returned to KLCC Convention Centre at approximately 4.45pm.

At KLCC, the Taiwanese participants invited me to join them for some last minute shopping at the mall. We had a great time together.

Boat cruise at Putrajaya with fellow delegates

Having attended AOEA for the first time, I hope to be able to attend future conventions/conferences related to epilepsy. AOEA has enriched my life and taught me how to continue in my pursuit to achieve better ways of assisting my epileptic friends in Persatuan Epilepsi Malaysia.

Final group photo

Related Link:

Children With Disability blog

FAMOUS PEOPLE WITH EPILEPSY

Leornado Da Vinci (1452–1519)

-Tuscan polymath: scientist, mathematician, engineer, inventor, anatomist, painter, sculptor, architect, botanist, musician and writer

-Nervous shaking and spasms when furious.







Martin Luther (1483–1546)

- German monk, theologian, and church reformer

-In John Osborne's play Luther, his visions are the result of epileptic seizures. Luther had many documented illnesses, but any recurrent attacks were probably due to Ménière’s disease.






Joan Of Arc (1412–1431)

-15th century saint and national heroine of France

-Experienced religious messages through voices and visions which she said others could sometimes experience simultaneously. Some researchers consider the visions to be ecstatic epileptic auras, though more recent research may implicate idiopathic partial epilepsy with auditory features. Epileptic seizures with clear auditory and visual hallucinations are very rare. This, together with the extreme length of her visions, lead some to reject epilepsy as a cause.




Prince John of the United Kingdom (1905–1919)

-member of the British Royal Family

-The youngest son of King George V, John had epilepsy from the age of 4 until his death after a seizure aged 13. The shame of his epilepsy, along with other neurological problems, meant he was kept from the public eye.






Grover Cleveland Alexander (1887–1950)

-A major league baseball pitcher who tried to hide his epilepsy with alcohol, which was at the time considered to be a more socially acceptable problem.












Jimmy Reed (1925–1976)

-An American blues singer. His diagnosis of epilepsy in 1957 was delayed due to an assumption that these were attacks of delirium tremens. He died after an epileptic seizure aged 51.










Florence Griffith Joyner (1959–1998)

-An athlete with world records in the 100 m and 200 m. She developed seizures in her thirties, possibly due to a cavernous angioma that was discovered on autopsy. She died from asphyxiation after a grand mal seizure while asleep.

From Wikipedia, the free encyclopedia

http://en.wikipedia.org/wiki/List_of_people_with_epilepsy

Epilepsy Alert


Thursday November 22, 2007

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

Coping With Epilepsy

Thursday August 2, 2007

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 achieved 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 seen and be accepted by society as normal people,” she added.

Source: The Star paper

Living With Epilepsy

Thursday June 21, 2007

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