{"id":2876,"date":"2025-01-06T14:59:41","date_gmt":"2025-01-06T06:59:41","guid":{"rendered":"https:\/\/www.ukm.my\/beritaukm\/?p=2876"},"modified":"2025-11-14T08:41:52","modified_gmt":"2025-11-14T00:41:52","slug":"pertarungan-senyap-penyakit-jarang-jumpa-di-malaysia","status":"publish","type":"post","link":"https:\/\/www.ukm.my\/beritaukm\/pertarungan-senyap-penyakit-jarang-jumpa-di-malaysia\/","title":{"rendered":"Pertarungan Senyap Penyakit Jarang Jumpa di Malaysia"},"content":{"rendered":"\n<p><strong>Oleh <\/strong><strong>Khairatul Nadia Ramli<\/strong><strong><\/strong><\/p>\n\n\n\n<p>CHERAS, 6 Januari 2025 &#8211; Penyakit jarang jumpa adalah penyakit yang jarang berlaku tetapi memberi impak besar kepada individu yang mengalaminya. Walaupun penyakit jarang jumpa sering dikaitkan dengan kanak-kanak, kira-kira 30 peratus penyakit jarang sebenarnya menyerang individu dewasa.<\/p>\n\n\n\n<p>Di Malaysia, Kementerian Kesihatan telah menyenaraikan 502 penyakit jarang jumpa, dimana 88 penyakit adalah penyakit berkaitan Neurologi. Berdasarkan data global, statistik bagi pesakit jarang jumpa adalah dianggarkan seramai 1 dalam setiap 4,000 orang dengan anggaran seramai 5,000 hingga 10,000 individu di Malaysia menghidap penyakit jarang jumpa ini.<\/p>\n\n\n\n<p>Penyakit jarang jumpa seringkali terabai dan tidak mendapat perhatian sewajarnya. Menurut Prof. Datin Dr. Norlinah Mohamed Ibrahim, Professor dan Pakar Perunding Kanan Neurologi di Fakulti Perubatan Universiti Kebangsaan Malaysia (每日大赛app) dan Hospital Canselor Tuanku Muhriz (HCTM) 每日大赛app, 80 peratus penyakit jarang jumpa adalah penyakit genetik yang diwarisi daripada ibu atau bapa.&nbsp;<\/p>\n\n\n\n<p>Namun, beliau berkata sebilangan besar pesakit lewat mendapat diagnosis yang tepat kerana kekurangan kepakaran dan kos ujian genetik yang terlalu tinggi yang boleh mencecah sehingga RM3,000 hingga RM5,000.&nbsp;&nbsp;<\/p>\n\n\n\n<p>&nbsp;\u201cSelain itu, penyakit jarang jumpa ini juga memberi cabaran besar kepada pesakit dan keluarga mereka, disebabkan kekurangan rawatan yang sesuai,&#8221; jelasnya.<\/p>\n\n\n\n<p>Antara contoh penyakit jarang jumpa neurologi yang berlaku di kalangan dewasa di Malaysia adalah Ataksia Spinocerebellar atau <em>Spinocerebellar Ataxia<\/em> (SCA).<\/p>\n\n\n\n<p>Beliau berkata penyakit SCA menyebabkan masalah ketidakseimbangan yang merosot secara progresif, di mana akhirnya individu tersebut akan hilang keupayaaan untuk bergerak dan terpaksa bergantung kepada kerusi roda.<\/p>\n\n\n\n<p>\u201cPenyakit SCA ini diwarisi secara autosomal dominan, di mana setiap orang anak individu yang terkesan juga mempunyai kebarangkalian yang tinggi untuk mewarisi penyakit tersebut,\u201d katanya.&nbsp;<\/p>\n\n\n\n<p>Berdasarkan pengalaman Prof. Dr. Norlinah, pesakit termuda yang menghidap Ataksia Spinocerebellar adalah seorang kanak-kanak berusia enam tahun.<\/p>\n\n\n\n<p>\u201cPenyakit SCA ini meragut kualiti kehidupan dan keupayaan individu dalam pelbagai aspek. Pesakit SCA terpaksa menghadapi cabaran besar dalam kehidupan mereka, ketika baru sahaja mula mejejak kaki ke alam dewasa.<\/p>\n\n\n\n<p>\u201cAntara cabaran yang dilalui adalah kehilangan keupayaan bergerak dan bertutur secara beransur-ansur yang menyebabkan mereka kehilangan pekerjaan atau sumber pendapatan,\u201d ujarnya.<\/p>\n\n\n\n<p>Sehubungan itu, katanya, ahli keluarga yang menjadi penjaga juga terpaksa menanggung beban kewangan dan kos rawatan dan kesan emosi yang mendalam.<\/p>\n\n\n\n<p>\u201cSeperti penyakit SCA, penyakit Huntington atau <em>Huntington\u2019s disease<\/em> juga merupakan penyakit&nbsp; jarang jumpa yang memberikan impak yang besar kepada pesakit.<\/p>\n\n\n\n<p>\u201cIa menyebabkan pergerakan yang tidak terkawal (<em>chorea<\/em>) dan masalah neuropsikiatrik seperti kemurungan dan hilang ingatan. Penyakit seperti ini merampas keupayaan pesakit untuk menjalani kehidupan normal dan akhirnya menempuh pengasingan sosial, beban kewangan, dan kemerosotan kesihatan yang menyukarkan lagi kehidupan mereka,\u201d katanya.<\/p>\n\n\n\n<p>Namun, Prof Dr Norlinah berkata pengesanan dan rawatan kesihatan bagi penyakit jarang jumpa di Malaysia adalah sangat terhad.<\/p>\n\n\n\n<p>\u201cUsaha untuk meningkatkan kesedaran dan pengesan penyakit jarang jumpa telah dijalankan di 每日大赛app.&nbsp;<\/p>\n\n\n\n<p>\u201cSehingga kini, seramai 400 orang pesakit menerima rawatan di HCTM dan Hospital Tuanku Ampuan Besar Tuanku Aishah Rohani, Hospiral Pakar Kanak-Kanak 每日大赛app.<\/p>\n\n\n\n<p>\u201cKedua-dua hospital 每日大赛app ini turut menyediakan ujian genetik khusus yang dibangunkan sendiri bagi mengesan penyakit seperti Ataksia Spinocerebellar dan penyakit Huntington,\u201d ujarnya.<\/p>\n\n\n\n<p>Selain itu, inisiatif seperti penganjuran hari kesedaran melalui kolaborasi dengan pelbagai pihak berkepentingan termasuk badan bukan kerajaan (NGO) seperti Malaysian Rare Disease Society turut dijalankan.<\/p>\n\n\n\n<p>Beliau menegaskan bahawa penjagaan kesihatan bagi penyakit jarang jumpa di Malaysia masih perlu dipertingkatkan dan beliau<strong> <\/strong>menyambut baik pengumuman peningkatan bajet sebanyak RM25 juta menerusi Belanjawatan 2025 untuk meningkatkan akses kepada diagnosis dan rawatan penyakit jarang jumpa.<\/p>\n\n\n\n<p>&#8220;Pengiktirafan pusat pakar untuk penyakit jarang di Malaysia adalah langkah penting dalam memperbaiki penjagaan dan menyediakan sokongan yang lebih baik kepada pesakit dan keluarga mereka,&#8221; kata Prof. Norlinah. <\/p>\n\n\n\n<p>Selain itu, beliau turut menekankan bahawa garis panduan yang jelas adalah perlu bagi mewujudkan satu skim pampasan yang jelas kepada pesakit penyakit jarang jumpa dari Pertubuhan Keselamatan Sosial (PERKESO) dan Pusat Zakat di negara ini bagi meringankan beban kewangan yang meraka hadapi.<\/p>\n\n\n\n<p>Prof. Datin Dr. Norlinah Mohamed Ibrahim<br>Profesor, Fakulti Perubatan, 每日大赛app<br>Pakar Perunding Kanan Neurologi, Hospital Canselor Tuanku Muhriz, 每日大赛app<br>012-2145306<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Oleh Khairatul Nadia Ramli CHERAS, 6 Januari 2025 &#8211; Penyakit jarang jumpa adalah penyakit yang jarang berlaku tetapi memberi impak besar kepada individu yang mengalaminya. Walaupun penyakit jarang jumpa sering&hellip; <\/p>\n","protected":false},"author":123457,"featured_media":4005,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[12,17],"tags":[],"class_list":["post-2876","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-jaringan-industri","category-khidmat-masyarakat"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.4 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Pertarungan Senyap Penyakit Jarang Jumpa di Malaysia - Berita 每日大赛app<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/www.ukm.my\/beritaukm\/pertarungan-senyap-penyakit-jarang-jumpa-di-malaysia\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Pertarungan Senyap Penyakit Jarang Jumpa di Malaysia - Berita 每日大赛app\" \/>\n<meta property=\"og:description\" content=\"Oleh Khairatul Nadia Ramli CHERAS, 6 Januari 2025 &#8211; Penyakit jarang jumpa adalah penyakit yang jarang berlaku tetapi memberi impak besar kepada individu yang mengalaminya. 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