Weblog OKU 2

This blog are use both English language and Malays langauge. Anything issues about disabled people can be disscused here. This Blog also known as WEBLOG OKU. Blogger 1 January 2007

 
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Sindrom Hunter sukar dikesan
Saturday, January 13, 2007
Berita Harian, 13 Januari 2007

Oleh Hafizah Iszahanid

Kekacauan serius genetik kerap berlaku di kalangan populasi Yahudi

KURANG insentif untuk membangunkan ubat-ubatan merawat penyakit ganjil dan jarang terjadi selalunya membuatkan penyakit sebegitu tidak berupaya ditangani Malang sekali kebanyakan penyakit ganjil terjadi atas faktor diwarisi secara genetik. Malah, ia sudah diketahui dunia perubatan berdekad lamanya.

Antaranya, Sindrom Hunter atau mucopolysaccharidosis II (MPS II), masalah kekacauan genetik yang sangat serius.

Sindrom Hunter terjadi apabila enzim dalam tubuh yang diperlukan bagi memecahkan molekul yang dipanggil 'glycosaminoglycans’ (GAG) atau ‘mucopolysaccharides’ hilang atau tidak berfungsi.

Justeru tubuh tidak boleh memecahkan molekul yang kompleks ini, ia terkumpul menjadi jumlah yang mengancam sel dan tisu badan tertentu. Jumlah yang terkumpul itu membentuk satu binaan bersifat kekal, merosakkan penampilan secara progresif, perkembangan mental, fungsi organ dan keupayaan fizikal.

Jika pengumpulan GAG itu berterusan di semua sel pada seluruh tubuh, tanda-tanda serangan Sindrom Hunter akan lebih jelas dilihat.

Kerana itu, kanak-kanak yang berhadapan dengan Sindrom Hunter akan kelihatan normal pada awal kelahiran. Tetapi menjelang usianya dua tahun, simptom akan mula muncul.

Justeru ia menyerang atas faktor genetik, Sindrom Hunter lebih cenderung menyerang bayi lelaki berbanding perempuan.

Sindrom Hunter boleh terjadi pada mana-mana kumpulan etnik. Begitupun, dilaporkan ia lebih kerap terjadi di kalangan populasi Yahudi di Israel. Ia muncul satu dalam 65,000 kelahiran atau seorang dalam 132,000 kelahiran.

Simptom

Satu daripada sebab ibu bapa kurang mengenali penyakit ini mungkin simptomnya adalah masalah kesihatan yang biasa dialami kanak-kanak.

Ini termasuklah masalah jangkitan telinga dan selesema. Begitupun, ibu bapa boleh mengenali pesakit Sindrom Hunter dengan mudah jika dilihat dari sudut penampilan fizikal anak.

Biasanya pesakit Sindrom Hunter berdahi luas, tiada batang hidung (hidung kembang) dan lidah yang besar. Kepala mereka juga besar dan perut buncit. Kerana itu, kebanyakan pesakit memiliki wajah yang hampir sama.

Selain itu hampir semua sendi utama (siku, bahu dan lutut) boleh terjejas disebabkan Sindrom Hunter. Ini membawa kepada kesakitan sendi dan pergerakan yang terhad.

Mereka juga kerap berhadapan masalah jangkitan telinga dan pernafasan. Lebih malang, ada antara mereka turut mengalami masalah pendengaran, ketebalan injap jantung yang membawa kepada penurunan fungsi kardiak, masalah pernafasan, masalah tidur (sleep apnea) selain hati dan limpa yang membengkak.

Dalam sesetengah kes, jika sistem saraf tengah turut terjejas, ia akan melambatkan perkembangan kanak-kanak itu selain menjejaskan sistem sarafnya.

Begitupun, bukan semua pesakit Sindrom Hunter terjejas dalam cara yang sama. Senario simptomnya juga pelbagai.

Rawatan

Menurut Persatuan Metabolik Malaysia, kebanyakan pesakit penyakit ganjil dan jarang berlaku seperti ini berhadapan masalah rawatan.

Ini disebabkan tiada penawar yang dibangunkan untuk menangani penyakit sebegitu. Bagi syarikat pengeluar ubat-ubatan, tidak ada insentif untuk membangunkan ubat bagi penyakit begini kerana kurang peluang meraih keuntungan dari populasi yang sedikit.

Mungkin kerana itu di Amerika, Akta ubat-ubatan terpinggir 1983 digubal, bagi menstimulasi pembangunan ubat-ubatan penyakit sebegini. Penyakit ganjil menurut akta itu adalah penyakit yang dideritai kurang dari 200,000 orang.

Mengikut langkah Amerika, beberapa negara Asia seperti Jepun, Taiwan dan Korea menggubal undang-undang sama. Dalam konteks tempatan, undang-undang sebegitu belum wujud. Tetapi Persatuan Metabolik Malaysia tetap berusaha gigih untuk memastikan kepentingan pesakit ganjil termasuk Sindrom Hunter.

Penasihat Persatuan Metabolik Malaysia, Dr YS Choy, berkata kurang kesedaran dan pengetahuan mengenai penyakit sebegini juga mungkin menyebabkan ia sukar diubati.

Tetapi, rawatan yang ada sekarang termasuklah terapi gantian enzim, terapi sel stem dan pemindahan sum-sum tulang.

Justeru ia masalah yang jarang berlaku (tetapi kumpulan besar penyakit ini dikenali sebagai penyakit kekacauan metabolik dan jumlahnya semakin meningkat di Malaysia) jika anda tahu sesiapa yang berhadapan dengan Sindrom Hunter dapatkan maklumat lanjut mengenainya. Ia akan membantu penyelidikan rawatannya.

Untuk maklumat lanjut, anda digalakkan menghubungi Persatuan Metabolik Malaysia di Klinik Metabolik dan Institut Genetik, Institut Pediatrik, Hospital Kuala Lumpur.

FAKTA

# Sindrom Hunter dinamakan sempena nama seorang profesor dari Kanada, Charles Hunter yang menjelaskan penyakit ini kepada dunia sekitar 1917.

# Belum ada penawar boleh menyembuhkan Sindrom Hunter secara sempurna.

# Ada dua jenis Sindrom Hunter, MPSII A dan MPSII B.

# Perkembangan pesakit mula terjejas antara usia satu setengah tahun dan tiga tahun. Ini diikuti kehilangan keupayaan lain seperti pergerakan yang terjejas.

# Walaupun usia pesakit semuda dua tahun, pesakit MPSII A akan mengalami sakit sendi.

# Risiko anak yang bakal lahir berhadapan dengan Sindrom Hunter ditentukan oleh genetik ibunya.

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Dari Penulis/ Owner Weblog OKU 2
Assalamualaikum...

Weblog ini diwujudkan untuk mengumpulkan sebanyak mungkin maklumat-maklumat berkenaan OKU.

Ia merupakan kesinambungan dari weblog oku 1 iaitu Anything About Disabled People.

Penulis/ owner of this blog adalah seorang OKU yang terlibat dalam kemalangan jalanraya pada Ogos 1992 di lebuhraya Paloh Inai, Kuantan, Pahang.

Itulah serba sedikit mengenai biodata penulis/ owner blog.

Wassallam...

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1 January 2007
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40 Reasons why you should join AGLOCO

1. You can make money safely, legitimately, and easily.

2. It takes maybe three minutes to join.

3. You need nothing more than a working computer connected to the Internet.

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7. It's easy to cancel if you don't want to be a member any more.

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15. The sooner you sign up, the more folks will come to you for info and the more likely it is that you will be the original seed of a large referral network in your community.

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18. You don't have to change anything you normally do on the Internet. You surf, AGLOCO pays.

19. AGLOCO's revenue source is genuine: a Viewbar members use that shows targeted advertisements based on your surf history, with the money paid to advertise going back to the members. That's not magic; that's common sense.

20. The Viewbar software you will download will not invade your privacy; it simply looks for keywords on the pages you view in order to show related ads.

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23. In fact, AGLOCO has not one but three agreements every member must agree to. The bases are covered.

24. AGLOCO has a CPO - Chief Privacy Officer - whose responsibility is to make sure your privacy is never violated. His name is Ray Everett-Church, and he has more experience protecting privacy than probably anyone else on the planet.

25. AGLOCO doesn't play; anybody providing fake information, signing up twice, or otherwise trying to cheat the system will be detected by AGLOCO's anti-hacking instruments. This is an honest enterprise through and through.

26. By signing up, you support the company that will change Internet advertising for the better.

27. By signing up, you get to own a piece of the company that will change Internet advertising for the better. AGLOCO belongs to its members, which is to say that...

28. ...you will own stock (more if you refer people) in a company that is likely to become huge and thus your stock will be worth something awesome when AGLOCO goes public on the London Stock Exchange.

29. You will likely find that other AGLOCO members, especially now in the early stages of AGLOCO, are some of the Web's savviest users and developers, and you can learn a bunch from them.

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31. ...discounts when members buy from companies affiliated with AGLOCO;

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33. ...community forums where members can meet and discuss not just stuff, but ways and member-based projects to make AGLOCO better (it is our company).

34. Our company is in good hands. AGLOCO pays 10% of its revenues to Infomediary Services Corporation (ISC), which is simply the management company that is responsible for managing AGLOCO. The other 90% of the revenue belongs to us. This 10% will attract the designing talent needed to make AGLOCO great. The corresponding 10% of AGLOCO's shares go to a foundation dedicated to providing every human being on Earth with Internet access.

35. AGLOCO's management team will not get stock in AGLOCO. This ensures that those in positions of high responsibility don't hijack the company.

36. Though circumstances will vary, you can get paid and earn shares no matter where on Earth you live.

37. If you choose, you can donate your earnings and shares to the charity of your choice.

38. If you get involved in referring more members, you might be able to quit your day job and actually spend time at home, with your family, on vacation, wherever - and still make money.

39. If AGLOCO fails, you won't lose any money because you paid none in the first place.

40. AGLOCO ain't gonna fail. The last time such an opportunity existed, people made over $120 million in under 2 years, when far less people had Internet access and conditions weren't yet right for such a company to go public. Now, with record spending on advertising and calls from all sides for less irrelevant advertising and a better business/customer connection, the world is more than ready for an economic network that gives back to its users.

Now, if you aren't yet a member, after everything I just told you, you're not going to go and sign up?

Author: Michael H. Lewis

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