Pendarahan Tanpa Henti

Mengalami pendarahan tanpa henti hingga bantal diguna lencun dibasahi darah antara pengalaman gigi patah yang luar biasa buat kanak-kanak berusia 10 tahun.

Namun, bagi pesakit hemofilia seperti Taqrir Akramin Khalib, 45, pengalaman sebegitu sudah ditempuh lebih empat dekad hayatnya apabila ibunya dikenal pasti sebagai pembawa penyakit genetik itu. Menyebabkan dia dan adik lelaki mewarisi penyakit genetik berkenaan.

Menurut peguam sivil yang berasal dari Alor Setar itu, sebahagian besar kenangan kanak-kanaknya berkisar dengan kehidupan di hospital serta kesusahan ibu bapanya berulang-alik di antara Kedah dan ibu kota bagi mendapatkan rawatan di Pusat Darah Negara.

“Dalam kes pesakit hemofilia seperti saya, luka kecil boleh membawa kepada pendarahan tanpa henti dan pengalaman sendiri iaitu pendarahan berlanjutan sehingga tiga hari. Paling mencabar apabila ada satu ketika, bapa saya terpaksa meminta bantuan pihak penjara hanya untuk mendapatkan penderma darah buat saya,” kata Taqrir.

Hemofilia adalah penyakit genetik membabitkan kekurangan faktor A dan B menjurus ke masalah pendarahan berpanjangan dan biasanya dihadapi lelaki manakala perempuan kebanyakan mereka adalah pembawa.

Biasanya, kalau individu normal mempunyai faktor A dan B yang mencukupi, ia merujuk pada protein bertindak sebagai agen pembeku darah dengan membentuk jaring penahan di sekitar platelet (sel darah) hingga dapat membekukan darah dan pada akhirnya menghentikan perdarahan.

“Namun, penghidap seperti kami mudah terdedah kepada risiko pendarahan serius, bukan saja pendarahan luar malah dalaman jauh lebih berbahaya kerana boleh membawa maut membabitkan anggota utama seperti otak, paru-paru dan usus,” katanya.

Meskipun begitu, Taqrir yang juga Presiden Persatuan Hemofilia Malaysia, mempunyai perspektif lebih baik berkenaan masa depan penghidap hemofilia apabila teknologi perubatan masa kini memberi pilihan kepada akses rawatan lebih baik dalam mempertingkatkan kualiti mereka mempunyai gen luar biasa itu.

“Kalau dulu tempoh rawatan lebih sukar kerana perlukan pemindahan darah tetapi kini sudah ada rawatan profileksis, iaitu suntikan ekstrak faktor A atau B dalam ke dalam darah yang boleh dilakukan sendiri oleh penghidap bagi mengelak risiko pendarahan berpanjangan.

“Cuma perlu lebih berhati-hati dengan aktiviti berimpak tinggi, terutama ketika riadah atau rutin harian bagi mengelak pendarahan dalaman. Bagi penghidap hemofilia, ketahanan fizikal ‘rapuh’ bergantung pada tahap serius penyakit terbabit,” katanya pada Majlis Pelancaran Buku Komik ‘The Hemophilia Mythbusters’ di ibu kota, baru-baru ini.

Pelancaran komik terbabit bersempena Hari Hemofilia Sedunia diraikan setiap 17 April, bertujuan memberikan kesedaran kepada masyarakat berkenaan kewujudan penyakit jarang ditemui ini, iaitu setiap 10,000 kelahiran satunya mengidap penyakit terbabit.

“Meskipun ketika ini tiada ubat dapat menyembuhkan penyakit darah berkenaan, kesedaran orang awam masih diperlu supaya mereka dapat tangani dan membiasakan diri dengan persekitaran individu yang menderitai hemofilia.

“Sebagai inisiatif menyokong kesedaran awal terhadap penyakit terbabit, persatuan melancarkan komik ‘The Hemophilia Mythbusters’ kolaborasi bersama Miao & WafuPafu yang menggariskan mitos mengenai hemofilia.

“Kanak-kanak adalah golongan paling sukar memahami mengenai penyakit hemofilia ini. Ada antara mereka hidup dengan pemikiran salah hingga bertindak membataskan diri daripada aktiviti triadah kerana bimbang penyakit terbabit. Padahal bersukan dan gaya hidup aktif seperti berjalan dan sebagainya disarankan bagi menguatkan otot.

“Mitos lain, ramai yang melihat pesakit hemofilia pasti mati disebabkan kehilangan darah. Hakikatnya, ramai individu menderitai penyakit ini meninggal dunia disebabkan faktor selain pendarahan. Andai pesakit mengikut nasihat doktor dan menjalani rawatan, mereka boleh menikmati hidup lebih selesa dan positif,” katanya.

Jelas Taqrir lagi, tanggapan kononnya hanya lelaki menghidap penyakit hemofilia perlu diperbetulkan kerana wanita juga antara penyumbang kepada punca penyakit menerusi peranan sebagai pembawa. Dalam kes terpencil pula, ada penghidapnya tidak mempunyai ibu bapa pembawa gen hemofilia tetapi berlaku perubahan (mutasi) gen pesakit. Sebanyak 30 peratus kes hemofilia dilaporkan membabitkan mutasi gen.

Dalam program berkenaan, turut diperkenalkan buku log digital dalam bentuk aplikasi telefon pintar untuk kemudahan pesakit iaitu Zero Bleed, direka Shier bagi membantu pesakit, penjaga dan doktor memantau rutin infusi, rawatan selain insiden kecederaan.

TAHAP HEMOFILIA

Lima hingga 30 peratus tahap aktiviti normal faktor pembekuan darah.

Pendarahan berlebihan selepas pembedahan atau kemalangan.

Jarang atau tidak langsung berdarah dengan sendirinya.

Satu hingga lima peratus aktiviti normal faktor pembekuan darah.

Pendarahan sesekali berlaku secara spontan.

Berlaku pendarahan berlebihan lantaran luka, kemalangan atau pembedahan, contohnya berkhatan atau cabut gigi.

Kurang satu peratus daripada aktiviti normal faktor pembekuan darah.

Pendarahan spontan kerap berlaku.

Pendarahan berpanjangan selepas luka atau kemalangan.

Tanda pendarahan jadi ketara apabila kanak-kanak mula merangkak atau berjalan.

Sumber: myhealth.gov.my

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