DEALING WITH FITS

WHEEL POWER
By ANTHONY THANASAYAN

24 July, Thursday

Having lived with epilepsy for more than 30 years, Serene Low is out to promote awareness about the condition.

SERENE Low is no ordinary woman. The plucky mother and homemaker from Bangsar, Kuala Lumpur, has been an activist for persons with epilepsy (PWE) for the past seven years. She chose to champion the cause because she has epilepsy – a condition marked by seizures that can occasionally be violent. The attacks occur because of over-activity of the brain cells which produces a surge of electricity.

Serene, who is close to 50, has been living with epilepsy for over 30 years. She has endured more than a hundred seizures. The last one occurred four years ago. Fortunately, the convulsions stopped after she started taking medication.

Serene was all praise for an epilepsy congress she attended in Xiamen, China, in May. The 7th Asian Oceania Epilepsy Congress (AOEC), a four-day biennial event, was attended by 1,600 delegates from around the world.

“The congress was about PWE and their caregivers,” she explained. We learnt about the latest progress in the treatment of epilepsy in developed and developing countries.

“The segment I liked most was the one on Adolescence & Women. Using a 15-year-old epileptic girl’s condition as a case study, the medical delegates were reminded to be extra careful when prescribing anti-epileptic drugs,” said Serene. The delegates were told that the medications prescribed should not adversely affect a PWE’s transition through life, from adolescence to pregnancy and motherhood, and then eventually to menopause and old age.

Serene said caregivers were encouraged to have a mobile phone with camera and video functions handy at all times, so that they could take photos and video shots when a loved one is experiencing a seizure. “This will help the neurologist to assess the patient’s epileptic seizure episodes more accurately,” said Serene. “Watching a seizure in progress or through a photo shot gives doctors a better idea of our seizures than trying to explain to them verbally.”

Serene said the congress gave her a rare opportunity to meet delegates from other countries. By meeting people from countries such as the Philippines, China and Mongolia, I was able to foster new friendships and learn about various cultural reactions towards epilepsy and how the delegates were managing in their own countries.

“Some of the PWE at the congress received special recognition awards for their struggles. They presented moving testimonies of how epilepsy had affected their lives, and how they won each personal battle.” The delegates also learnt about epilepsy awareness programmes in other countries.

“Taiwan gave an interesting presentation on how they tackled the stigma of PWE by turning them into epilepsy ambassadors. India has its distance learning methods, while in Shanghai, more support groups are slowly emerging,” said Serene.

The term “epilepsy” carried a negative connotation in some local languages and dialects, and this added to the stigma of PWE. The delegates talked about finding new terminologies so that the public could start viewing PWE more positively.

Serene recalled a quote from an Australian speaker: “When I let go of what I am, I become what I might be.” Those words helped to fuel my passion for the epilepsy awareness campaign,” said Serene.

“I hope that together with the government and relevant bodies, we can bridge the wide gap between society and people with epilepsy.”

MOTHER HONORED FOR FIGHT TO ENSURE JET’S LAW LEGACY

THERE are legendary tales throughout history about what mothers have done to save their own children. In Queensland, there is a mother who has saved the lives of countless others after she was denied the chance to save her own son. Anita Rowland's one-woman battle to change legislation after a driver suffered an epileptic fit and crashed into her car at 240km/h in 2004 - killing one son and paralysing the other - is now enshrined in state law.

Jet's Law - named after 22-month-old Jet Rowland, who died in the 2004 crash - is the first eponymous law in Queensland. Most importantly, it has seen more than 121,000 drivers register with Queensland Transport the medical condition that affects their driving.Ms Rowland, 31, a Queensland Police Service senior constable, has been nominated for the 2008 Pride of Australia Courage award for somehow finding the fortitude, despite her grief, to not only fight for the new law but to educate thousands across the state in driver workshops about the aftermath of road tragedy."

"I remember being at home and I can't seriously put into words how much I missed Jet. I remember thinking - all I want is Jet back," she said. "But that was never going to happen. So, I guess it was a very personal decision for me to want to do something positive with this experience. I didn't want another family to go through the grief that was inflicted on my family.”

"The driver that collided with us was a lifelong epileptic who was suffering from unstable epilepsy but continued to drive knowing that his epilepsy was unstable. The choices and the decisions that driver made - putting the convenience of having a licence above every other road user and choosing to ignore and take responsibility for their medical condition - those choices ended Jet's life and Bailey's ability to walk. I really felt very passionate that this incident should never have happened and I needed to do something to prevent that from happening. "

"I would trade everything I own to trade Jetty back and because I can't change what happened, I really want Jet to be proud of me. I want him to be proud that I have done everything I possibly can, and I have done the best as I can and coped as best as I can with losing him so young. I think that when he looks down on me he will think - OK, my mum lost me very young, but she has tried to make something positive out of it.”

"Once upon a time I think it would have been easier to curl up in the fetal position and disappear. Now, however, I think it is harder to live life like that and that you really need to make the most of every opportunity you have because life ... it is very precious."

More than 1450 casualties were recorded as a result of crashes involving drivers and riders with medical conditions in Queensland between July 2001 and July 2006. Reportable medical conditions include dementia, stroke, epilepsy, sleeping disorders and angina. The driver in the crash that killed Jet has been charged with dangerous driving causing death.

July 19, 2008
Source : couriermail.com.au

7^TH ASIAN & OCEANIAN EPILEPSY CONGRESS ( AOEC )

Time passes by so fast. I still have fresh memories of the epilepsy congress that I attended last year and this year’s epilepsy congress is already an event of the past. I had attended the 7^th Asian & Oceanian Epilepsy Congress AOEC ( People with Epilepsy And Caregivers Program ) which was held on 16^th May 2008 at Xiamen, China.

As an epilepsy activist I always look forward to attending epilepsy congresses to learn more about the latest progress in the treatment of epilepsy in developed and developing countries, to participate in Question & Answer sessions (Q & A) of topics that are of great interests to me and naturally also to meet up with my foreign People With Epilepsy (PWE) friends again.

On the 15^th of May I attended a talk organized by UCB (M) Bhd held at the Sheraton Hotel, Xiamen. Three invited speakers spoke on different topics. My favorite topic was Adolescence & Women. A general case study based on a 15 year old epileptic girl was being discussed. The speaker reminded medical delegates that extra careful considerations and right decisions have to be made when prescribing anti epileptic drugs (AED) as the effects of AED will affect the 15 year old girl’s life starting from puberty to finishing university, working to being married and pregnancy to motherhood that will eventually lead to menopause and old age.

The speakers had also highlighted a common point in their talks and that is it is important for caregivers to have their hand phones with camera and video functions always with them. Caregivers can use hand phones to take photo shots and videos of their love ones while in states of seizures. Neurologists can assess their patients’ epileptic seizures more accurately by viewing the photo shots and video clips as compared to verbal reports given by caregivers.

I am the fifth from left. My friends from Singapore, Taiwan and Philippines

On the morning of 16^th of May I was overjoyed to see my overseas friends from Philippines, Taiwan, Hong Kong and Singapore at the Xiamen International Conference and Exhibition Centre. Existing friendships were strengthened and new friendships were fostered. Delegates also came from China, Thailand, India and Mongolia.

The program for this day started with the acknowledgement and presentation of Outstanding Persons Awards to eight recipients from various countries. Recipients gave testimonies of how they struggled with having epilepsy, how they conquered it and how much they had contributed towards epilepsy awareness work in their respective countries.

Speakers for the day came from New Zealand, India, China, Mongolia, Taiwan and Australia. Topics ranged from Epilepsy Distance Learning in India, Formation of a Support Group in Shanghai, Promising Strategy Program in Mongolia, Study on Stigma in China and Introduction of Epilepsy Ambassadors. I found the topic on Tips to Expand Your Organization to be very interesting and _­hope I will be able to share the information I had gained with my fellow friends in Malaysia.

Towards the later part of the day delegates were given opportunities to voice their opinions about whether the term “epilepsy” in some languages and dialects could cause misconception and stigma and also whether there is a need to change the term appropriately to eradicate misconception and stigma. Delegates participated actively in this interactive session with a panel of six neurologists. Because of time constraint a sub panel was being formed to deliberate further on this topic.

The day ended with a buffet dinner for the delegates at the Seaside Hotel which is conjoined to the convention centre. I had some time to mingle with the Chinese delegates. They were very friendly and warm towards me. We had photos taken together and I was also given small Olympic souvenir items by them.

On the whole the 7^th AOEC was an event worth attending for people with epilepsy and caregivers. AOEC is held once every two years in different countries. The next AOEC will be held in Australia in 2010. I returned to Malaysia bearing in mind a quote that an Australian speaker shared with us and that is “ When I let go of what I am, I become what I might be “. My passion in doing epilepsy awareness work remains deep and I hope people with the Ministry of Health, corporate sectors and our local epilepsy society can collaborate better to bridge the wide gap between people with epilepsy and society.

FDA Urging Black Box Warning For Epilepsy Drugs

WASHINGTON (Reuters) - Food and Drug Administration officials are pushing for a "black box" warning about the risk of suicidal thoughts and behavior with epilepsy drugs, just days ahead of a public meeting on the issue.

"We are going to ask for a boxed warning on these drugs," FDA spokeswoman Sandy Walsh said on Monday. The warning would apply to all epilepsy drugs, even those that showed no risk signal, according to an agency memo that was also released.

The FDA will ask an advisory panel on Thursday to weigh the proposed boxed warning -- the strongest type the agency can seek. The panel of outside experts is set to discuss risks with drugs to treat the disease, which is marked by seizures that can cause involuntary movement or behavior.

Last month, an FDA analysis concluded the medicines are associated with a higher risk of suicidal thoughts and behavior. That echoed findings from other other data released by the agency earlier this year. FDA's Walsh said the agency is proposing the black-box warning based on that data, but will seek the panel's input.

July 7, 2008 Monday

Source : reuters.com

"We are what we eat. What goes into our body is reflected in our state of mind and health. Consumers should always be made aware of the pros and cons of the drugs they are on", says Serene

Khamis, 28 Februari 2008 (Thursday)

EPILEPSI TAK HALANG KEHIDUPAN NORMAL (Epilepsy is not an obstacle to living a normal life)

Oleh Nor Afzan Mohamad Yusof

BAHAGIA: Low buktikan epilepsi bukan penghalang untuk memiliki keluarga ceria.

Penghidap perlu ada semangat kental berhadapan dengan masyarakat

PESAKIT epilepsi masih dianggap sebagai penyakit yang luar biasa. Perilaku pesakit ketika serangan bukan saja boleh mengejutkan orang sekeliling tetapi juga mengundang bahaya sekiranya ia berlaku berhampiran objek berbahaya.

Walaupun negara semakin maju, realitinya masyarakat masih menganggap ia bukan penyakit glamor dan tiada nasib pesakit yang boleh diperjuangkan nasibnya melainkan pesakit itu sendiri.

Aktivis epilepsi, Serene Low, 48 berkata menyedari kesukaran itu menyebabkan tiada seorangpun pesakit yang berani menyatakan diri berhadapan penyakit itu, berbanding penyakit lain seperti barah dan sebagainya.

"Sebagai aktivis saya selalu bertanyakan kepada individu apakah yang mereka faham mengenai epilepsi dan apabila diberikan penerangan, individu itu seakan-akan terlalu takut. Kita boleh lihat menerusi gelaran penyakit. Kalau dalam bahasa Melayu ia digelar 'gila babi' dan dalam bahasa Cina pula 'lembu gila'.

"Gelaran yang menakutkan ini sudah menunjukkan bagaimana keadaan penyakit itu. Saya fikir sudah sampai masanya gelaran itu dihentikan kerana ia berlaku bukan atas kehendak pesakit, malah hari ini semakin ramai pula yang terdedah kepada sawan akibat penyakit dan trauma," katanya ketika ditemui baru-baru ini menceritakan keadaan diri sebagai pesakit epilepsi.

Penyakit itu dikaitkan dengan kenan haiwan atau penyakit misteri. Takut melihat perilaku pesakit ketika menghidapi epilepsi antara tanggapan masyarakat terhadap penghidap epilepsi menjadikan mereka sanggup menipu dalam permohonan kerja demi meneruskan kelangsungan hidup. Realitinya epilepsi ada di mana jua di dunia dan ia adalah gangguan sistem urat saraf (neurologikal) tidak menentu yang serius serta paling kerap ditemui.

Keadaan itu menyebabkan rasa rendah diri yang ada dalam diri pesakit semakin menebal, menjadikan mereka rela melindungi penyakit dihidapi dalam permohonan pekerjaan kerana secara automatik majikan akan menolak permohonan tanpa mengetahui status terkini pesakit.

SEMANGAT: Low masih mampu menjaga anak kecilnya.

Beliau yang kini berkeluarga dan memiliki seorang anak remaja lelaki berusia 20 tahun berkata, tuah dan semangat yang kental saja membolehkan seorang pesakit meneruskan kehidupan.

"Sebagai pesakit saya juga melalui penderitaan yang sama. Malu, menyalahkan diri sendiri dan rasa rendah diri semuanya bercampur baur tetapi akhirnya saya sedari kita sendiri perlu merubah tanggapan dan bangun untuk memperjuangkan kehidupan kerana realitinya penyakit ini tidak akan berhenti," katanya.

BANGGA: Low dan suami ketika menghadiri satu majlis di sekolah anaknya.

Serene yang mengidap epilepsi sejak kanak-kanak berkata, ia berpunca daripada lambat rawatan kesan demam yang terlalu tinggi. Gara-gara kurang pengetahuan berhubung epilepsi sekitar tahun 70-an, nyawanya nyaris melayang kerana terkena serangan ketika bermain di tepi laut Port Dickson pada usia 18 tahun.

"Zaman remaja saya juga agak sukar, kerana kerana ketika meneruskan peperiksaan untuk mendapatkan Diploma, saya terkena serangan dalam dewan peperiksaan. Rakan baik saya menyatakan, keadaan kelam kabut ketika itu, dengan keadaan saya yang sebegitu dan pensyarah pula takut calon lain meniru.

"Sesampai di hospital, saya menangis yang teramat sangat kerana tidak dapat meneruskan menjawab soalan kerana ia sudah diikat kemas dan akan dihantar ke Australia. Saya memang rasa kecewa kerana terpaksa menunggu masa setahun selepas itu untuk mengambil peperiksaan serupa," katanya.

Beliau berkata, disebabkan banyak berlaku serangan, banyak aktiviti dihadkan kerana takut berlaku serangan di tempat terbuka sebaliknya, menyertai orang tua melakukan tai chi di gereja.

Katanya, dalam kelas berkenaan beliau saja yang paling muda dan ada di kalangan peserta yang 'berkenan' untuk menjadikan beliau menantu.

"Sebelum ini ramai juga yang ingin berkenalan tetapi perhubungan tidak menjadi kerana mereka tidak mahu terbabit dengan pesakit epilepsi. Memang saya ingatkan akan solo sampai ke tua tetapi dalam pertemuan dengan suami, bila saya terangkan mengenai epilepsi dan serangan, suami (ketika itu bakal suami) langsung tidak menunjukkan muka takut sebaliknya berkata "kalau begitu, bagaimana saya boleh membantu awak?".

"Saya dapat rasakan itulah pilihan paling tepat dan akhirnya mengakhiri zaman bujang pada usia 26 tahun. Seperti wanita lain tidak beberapa lama selepas itu saya disahkan mengandung. Saya terlalu takut dan banyak persoalan yang berlegar dalam fikiran, seperti bagaimanakah keadaan anak saya nanti? Adakah dia akan cacat kerana saya tahu sudah pasti saya banyak mengambil ubat dan bagaimana pula sekiranya serangan terlalu kerap berlaku?," katanya.

Low berkata, masih segar dalam ingatannya bagaimana ketika melalui proses kehamilan, serangan tidak berlaku kerana doktor menetapkan kadar ubat yang perlu diambil. Sungguhpun begitu pada minggu ke 37 kandungan saya didapati tidak bergerak. Saya cemas dan terus ke hospital.

"Dalam kecemasan itulah saya melihat kerjasama yang cemerlang antara pakar saraf dan perbidanan. Masing-masing segera meneruskan kelahiran menerusi pembedahan dan akhirnya anak saya selamat dilahirkan. Dan hingga ke hari ini anak saya memang tahu 'menjaga' saya.

"Saya selalu berpesan pada dirinya, kalau berlaku serangan, usah gentar, sebaliknya biarkan ia berlaku, cuma jauhkan objek berbahaya daripada saya dan meletakkan bantal di bawah kepala," katanya.

Low berkata, mempunyai keluarga yang memberikan sokongan tidak berbelah bagi antara perkara paling berharga buat dirinya. Suami yang dulu bekerja makan gaji, kini beralih dengan melakukan kerja dari rumah, untuk memastikan keadaan dirinya selamat.

"Sebagai pesakit kita tidak tidak boleh menjangka bila serangan berlaku, tetapi kita perlu tahu mengawalnya dengan makan ubat yang teratur. Berkhidmat sebagai aktivis, sengaja saya paparkan kisah saya ini kerana sebagai pesakit, kita perlu perjuangkan nasib kita sendiri.

"Walaupun ia agak sukar tetapi kita perlu selalu mencuba, dan sokongan daripada keluarga akan membantu semangat kita untuk terus berjuang. Pesakit perlu mendapatkan rawatan sewajarnya kerana kemajuan hari ini ada pesakit yang boleh sembuh. Bagi anak yang bersekolah, ada guru yang tidak tahu menangani pesakit ini ketika berhadapan serangan.

"Dalam kebanyakan kes ada anak yang malu untuk ke sekolah apabila diejek rakan, hingga menyebabkan mereka langsung tidak berminat untuk ke sekolah dan masa depan mereka akan semakin tidak menentu apabila ibu bapa juga tidak mencari penawar sebenarnya," katanya yang akan ke luar negara menemani permata hati menuntut ilmu.

THE MOUSE TRAP
by Author Unknown


A mouse looked through the crack in the wall to see the farmer and his wife open a package.

What food might this contain?" The mouse wondered - he was devastated to discover it was a mousetrap. Retreating to the farmyard, the mouse proclaimed the warning. There is a mousetrap in the house! There is a mousetrap in the house!"

The chicken clucked and scratched, raised her head and said, "Mr. Mouse, I can tell this is a grave concern to you, but it is of no consequence to me. I cannot be bothered by it."

The mouse turned to the pig and told him, "There is a mousetrap in the house! There is a mousetrap in the house!" The pig sympathized, but said, "I am so very sorry, Mr. Mouse, but there is nothing I can do about it but pray. Be assured you are in my prayers."

The mouse turned to the cow and said "There is a mousetrap in the house! There is a mousetrap in the house!" The cow said, "Wow, Mr. Mouse. I'm sorry for you, but it's no skin off my nose."

So, the mouse returned to the house, head down and dejected, to face the farmer's mousetrap alone.

That very night a sound was heard throughout the house -- like the sound of a mousetrap catching its prey. The farmer's wife rushed to see what was caught. In the darkness, she did not see it was a venomous snake whose tail the trap had caught. The snake bit the farmer's wife. The farmer rushed her to the hospital, and she returned home with a fever.

Everyone knows you treat a fever with fresh chicken soup, so the farmer took his hatchet to the farmyard for the soup's main ingredient.

But his wife's sickness continued, so friends and neighbors came to sit with her around the clock. To feed them, the farmer butchered the pig.

The farmer's wife did not get well; she died. So many people came for her funeral; the farmer had the cow slaughtered to provide enough meat for all of them.

The mouse looked upon it all from his crack in the wall with great sadness.


The next time you hear someone is facing a problem and think it doesn't concern you, remember -- when one of us is threatened, we are all at risk. We are all involved in this journey called life. We must keep an eye out for one another and make an extra effort to encourage and help one another.

IMPORTANT TO CAREGIVERS AND EYE WITNESSES


Use your handphone to capture on video or take photo shots of your loved ones in a state of seizure. By doing this, you will provide accurate information to help neurologists assess and diagnose better.



ALWAYS HAVE YOUR CAMERA HANDPHONE WITH YOU!

BEDTIME STORY FOR CHILDREN

DOTTY THE DALMATION HAS EPILEPSY

In the center of the city, in an old brick building, was Firehouse No.9. Inside the firehouse lived a Dalmation named Dotty and her mother. Dotty is best friend with a fireman named Bob, and she had a lot of fun playing on the fire engine with him. Dotty dreamed of the day when she would become the firehouse mascot.

One sunny day as Dotty was playing behind the firehouse, something happened. She felt a tingling sensation in her legs and a full feeling in her tummy. Before long, Dotty’s whole body was shaking helplessly. Dotty’s mother rushed to her side and rubbed her gently until she felt better. “What happened?” a confused and sleepy Dotty asked. “I’m not sure, Dotty,” said her mother. “We’d better go see the doctor.”

Dr Bones examined Dotty carefully and asked how she felt. “A little tired,” Dotty said. The doctor explained, “Dotty, the shaking you felt earlier may have been an epileptic seizure. Epilepsy is a very common disorder, and we have medication to help prevent convulsions like yours.” And the doctor prescribed a medicine for Dotty, which she took every day.

When Dotty came back from the doctor’s office, she felt embarrassed about her convulsion. Now she was afraid she would not be the mascot. Several weeks went by, and she still refused to go into the firehouse.

“Dotty,” her mom said, “do you remember that German Shepherd who saved the child from the huge fire at the department store last year?” “Yes” said Dotty. “Well,” her mother said, “he had epilepsy, and he did not let it stop him.” Dotty couldn’t believe it. Why, that German Shepherd was so big and strong. If he could do that with epilepsy, then Dotty could too!

As Dotty made her way to the firehouse, the fire alarm sounded loudly. She ran and jumped up on the fire engine as it zoomed out of the firehouse on its way to the fire.

Outside a big building engulfed in fire a mother screamed, “My baby! He is still on the top floor.” When Dotty heard this, she jumped from the fire engine and ran into the building. The smoke was blinding and the fire was hot, as Dotty crawled on her stomach towards what she thought were the sounds of a crying baby. Dotty pushed open the door with her nose and found the baby curled up and crying. She picked him up and began carrying him down the stairs. Bob picked up the baby and carried him out of the building with Dotty following behind.

When the mother saw them she yelled, “You saved my baby!” Bob replied, “I could not have save your child without Dotty’s help.”

The next day the firefighters had a big surprise for Dotty. They gave her a BIG medal and an official fire helmet that read No.9,Mascot.

Story taken from the Dr. Wellbook Collection
Storybook was given to me with compliments from Epilepsy Foundation of Victoria, Australia