{"id":891,"date":"2017-02-26T22:11:39","date_gmt":"2017-02-26T22:11:39","guid":{"rendered":"https:\/\/www.progeriaresearch.org\/?page_id=891"},"modified":"2025-12-10T08:33:07","modified_gmt":"2025-12-10T13:33:07","slug":"patient-care-and-handbook","status":"publish","type":"page","link":"https:\/\/www.progeriaresearch.org\/id\/patient-care-and-handbook\/","title":{"rendered":"Perawatan Pasien dan Buku Pegangan"},"content":{"rendered":"<p>[et_pb_section fb_built=&#8221;1&#8243; fullwidth=&#8221;on&#8221; disabled_on=&#8221;off|off|off&#8221; _builder_version=&#8221;4.16&#8243; border_width_bottom=&#8221;55px&#8221; border_color_bottom=&#8221;#29327a&#8221; locked=&#8221;off&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_fullwidth_header _builder_version=&#8221;4.24.3&#8243; title_font=&#8221;||||||||&#8221; title_font_size=&#8221;55&#8243; background_color=&#8221;#29327a&#8221; background_image=&#8221;https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2019\/05\/parents-doctors-header-v4.jpg&#8221; custom_padding=&#8221;9vw||9vw||true&#8221; custom_padding_tablet=&#8221;&#8221; custom_padding_phone=&#8221;|56px||&#8221; custom_padding_last_edited=&#8221;on|desktop&#8221; title_font_size_tablet=&#8221;45px&#8221; title_font_size_phone=&#8221;40px&#8221; title_font_size_last_edited=&#8221;on|phone&#8221; z_index_tablet=&#8221;500&#8243; custom_css_main_element=&#8221;background-position: center 18% !important;&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<h1>Perawatan Klinis Progeria<\/h1>\n<h1>Buku Pegangan<\/h1>\n<p>&nbsp;<\/p>\n<p>[\/et_pb_fullwidth_header][\/et_pb_section][et_pb_section fb_built=\u201d1\u2033 gunakan_talang_khusus=\u201daktif\u201d lebar_talang=\u201d1\u2033 spesialisasi=\u201daktif\u201d padding_left_1=\u201d35px\u201d padding_left_2=\u201d35px\u201d padding_2_tablet=\u201d|||0px\u201d padding_2_phone=\u201d|||0px\u201d padding_2_last_edited=\u201daktif|desktop\u201d kelas_modul_1=\u201dnavigasi-sekunder-bilah-sisi\u201d kelas_modul=\u201dcetak-tangan-bg\u201d versi_pembuat=\u201d4.16\u2033 gambar_latar_belakang=\u201dhttps:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2019\/04\/blue-handprint-only.png\u201d paralaks=\u201daktif\u201d metode_paralaks=\u201dnonaktif\u201d lebar_dalam=\u201d100%\u201d lebar_maks_dalam=\u201d100%\u201d bantalan_khusus=\u201d0|0px|54px|0px|salah|salah\u201d indeks_z_tablet=\u201d500\u2033 lebar_batas_atas=\u201d10px\u201d warna_batas_atas=\u201d#8fd2ed\u201d gunakan_lebar_khusus=\u201daktif\u201d satuan_lebar=\u201dmati\u201d persentase_lebar_khusus=\u201d100%\u201d info_warna_global=\u201d{}\u201d][et_pb_column jenis=\u201d1_4\u2033 versi_pembuat=\u201d4.16\u2033 bantalan_khusus=\u201d|||\u201d global_colors_info=\u201d{}\u201d custom_padding__hover=\u201d|||\u201d][et_pb_sidebar area=\u201det_pb_widget_area_4\u2033 disabled_on=\u201don|on|off\u201d admin_label=\u201dBilah Sisi Orang Tua &amp; Dokter\u201d module_class=\u201dsubpage-sidebars\u201d _builder_version=\u201d4.16\u2033 animation_style=\u201dfade\u201d z_index_tablet=\u201d500\u2033 header_text_shadow_horizontal_length_tablet=\u201d0px\u201d header_text_shadow_vertical_length_tablet=\u201d0px\u201d header_text_shadow_blur_strength_tablet=\u201d1px\u201d body_text_shadow_horizontal_length_tablet=\u201d0px\u201d body_text_shadow_vertical_length_tablet=\u201d0px\u201d body_text_shadow_blur_strength_tablet=\u201d1px\u201d border_width_right=\u201d5px\u201d border_width_right_tablet=\u201d5px\u201d border_width_right_phone=\u201d5px\u201d box_shadow_horizontal_tablet=\u201d0px\u201d box_shadow_vertical_tablet=\u201d0px\u201d box_shadow_blur_tablet=\u201d40px\u201d box_shadow_spread_tablet=\u201d0px\u201d text_shadow_horizontal_length_tablet=\u201d0px\u201d text_shadow_vertical_length_tablet=\u201d0px\u201d text_shadow_blur_tablet=\u201d1px\u201d terkunci=\u201dnonaktif\u201d global_colors_info=\u201d{}\u201d]<br \/>\n[\/et_pb_sidebar][\/et_pb_column][et_pb_column type=&#8221;3_4&#8243; specialty_columns=&#8221;3&#8243; _builder_version=&#8221;4.16&#8243; custom_padding=&#8221;|||&#8221; global_colors_info=&#8221;{}&#8221; custom_padding__hover=&#8221;|||&#8221;][et_pb_row_inner custom_padding_last_edited=&#8221;on|phone&#8221; disabled_on=&#8221;on|on|&#8221; _builder_version=&#8221;4.16&#8243; custom_padding=&#8221;39.4375px|35px|0px||false|false&#8221; custom_padding_tablet=&#8221;|35px||35px||true&#8221; custom_padding_phone=&#8221;&#8221; animation_direction=&#8221;top&#8221; z_index_tablet=&#8221;500&#8243; global_colors_info=&#8221;{}&#8221;][et_pb_column_inner saved_specialty_column_type=&#8221;3_4&#8243; _builder_version=&#8221;4.16&#8243; custom_padding=&#8221;|||&#8221; global_colors_info=&#8221;{}&#8221; custom_padding__hover=&#8221;|||&#8221;][et_pb_text admin_label=&#8221;Purpose&#8221; _builder_version=&#8221;4.27.4&#8243; background_size=&#8221;initial&#8221; background_position=&#8221;top_left&#8221; background_repeat=&#8221;repeat&#8221; z_index_tablet=&#8221;500&#8243; box_shadow_horizontal_tablet=&#8221;0px&#8221; box_shadow_vertical_tablet=&#8221;0px&#8221; box_shadow_blur_tablet=&#8221;40px&#8221; box_shadow_spread_tablet=&#8221;0px&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<p><img loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-4629 alignright\" src=\"https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2019\/03\/english-front.jpg\" alt=\"\" width=\"200\" height=\"257\" \/><strong><span>Buku Pegangan Perawatan Klinis Progeria<\/span> Tujuan<br \/><\/strong>Karena sebagian besar perawat medis belum pernah merawat anak penderita Progeria, sering kali muncul pertanyaan tentang cara mengoptimalkan kualitas hidup melalui perawatan harian dan pengobatan medis. Untuk menjawab kebutuhan tersebut, pada bulan April 2010, PRF menerbitkan edisi pertama <em>Buku Pegangan Perawatan Klinis Progeria<\/em>, untuk keluarga yang terdampak Progeria dan dokter mereka. Dari fakta kesehatan dasar hingga rekomendasi perawatan harian hingga panduan perawatan yang lengkap, buku pegangan setebal 131 halaman ini membantu menjawab banyak pertanyaan untuk anak-anak penderita Progeria di seluruh dunia.<\/p>\n<p><strong>Pembaruan 2019<br \/><\/strong>Pada bulan Maret 2019, PRF memperbarui dan menyunting setiap bagian dari edisi pertama buku pegangan tersebut. Beberapa perubahan terbesar pada edisi kedua mencakup bagian baru tentang genetika dan konseling genetik untuk tenaga kesehatan, dan sejumlah besar informasi baru dari studi klinis terkini yang berasal dari komunitas penelitian Progeria, termasuk informasi kardiovaskular, neurovaskular, dan endokrin baru serta rekomendasi.<\/p>\n<p>[\/et_pb_text][\/et_pb_column_inner][\/et_pb_row_inner][et_pb_row_inner struktur_kolom=\u201d1_2,1_2\u2033 bantalan_khusus_terakhir_diedit=\u201daktif|ponsel\u201d dinonaktifkan_aktif=\u201daktif|aktif|nonaktif\u201d _builder_version=\u201d4.16\u2033 bantalan_khusus=\u201d|35px|0px||false|false\u201d bantalan_khusus_tablet=\u201d|35px||35px||true\u201d bantalan_khusus_ponsel=\u201d\u201d arah_animasi=\u201datas\u201d indeks_z_tablet=\u201d500\u2033 info_warna_global=\u201d{}\u201d][et_pb_column_inner jenis=\u201d1_2\u2033 jenis_kolom_khusus_yang_disimpan=\u201d3_4\u2033 _builder_version=\u201d4.16\u2033 custom_padding=\u201d|||\u201d 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url_new_window=&#8221;on&#8221; button_text=&#8221;Download 2nd Edition \u2013 Korean&#8221; admin_label=&#8221;Korean 2nd ed&#8221; _builder_version=&#8221;4.27.4&#8243; background_layout=&#8221;dark&#8221; custom_margin=&#8221;||10px&#8221; z_index_tablet=&#8221;500&#8243; button_text_shadow_horizontal_length_tablet=&#8221;0px&#8221; button_text_shadow_vertical_length_tablet=&#8221;0px&#8221; button_text_shadow_blur_strength_tablet=&#8221;1px&#8221; box_shadow_horizontal_tablet=&#8221;0px&#8221; box_shadow_vertical_tablet=&#8221;0px&#8221; box_shadow_blur_tablet=&#8221;40px&#8221; box_shadow_spread_tablet=&#8221;0px&#8221; global_colors_info=&#8221;{}&#8221;]<br \/>\n[\/et_pb_button][et_pb_button button_url=\u201dhttps:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2022\/11\/Manual-da-Progeria-2-ed.-Potugues-reduced-size-PDF.pdf\u201d url_new_window=\u201don\u201d button_text=\u201dUnduh Edisi ke-2 \u2013 Bahasa Portugis\u201d admin_label=\u201dBahasa Portugis edisi ke-2\u201d _builder_version=\u201d4.19.4\u2033 background_layout=\u201ddark\u201d custom_margin=\u201d||10px\u201d z_index_tablet=\u201d500\u2033 button_text_shadow_horizontal_length_tablet=\u201d0px\u201d button_text_shadow_vertical_length_tablet=\u201d0px\u201d button_text_shadow_blur_strength_tablet=\u201d1px\u201d bayangan_kotak_horizontal_tablet=\u201d0px\u201d bayangan_kotak_vertikal_tablet=\u201d0px\u201d bayangan_kotak_buram_tablet=\u201d40px\u201d bayangan_kotak_sebaran_tablet=\u201d0px\u201d info_warna_global=\u201d{}\u201d]<br \/>\n[\/et_pb_button][et_pb_button button_url=\u201dhttps:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2019\/07\/Progeria-Handbook-Spanish.pdf\u201d url_new_window=\u201don\u201d button_text=\u201dUnduh Edisi ke-2 \u2013 Bahasa Spanyol\u201d admin_label=\u201dBahasa Spanyol edisi ke-2\u201d _builder_version=\u201d4.16\u2033 background_layout=\u201dgelap\u201d custom_margin=\u201d||10px\u201d z_index_tablet=\u201d500\u2033 button_text_shadow_horizontal_length_tablet=\u201d0px\u201d button_text_shadow_vertical_length_tablet=\u201d0px\u201d button_text_shadow_blur_strength_tablet=\u201d1px\u201d box_shadow_horizontal_tablet=\u201d0px\u201d kotak_bayangan_vertikal_tablet=\u201d0px\u201d kotak_bayangan_buram_tablet=\u201d40px\u201d kotak_bayangan_sebaran_tablet=\u201d0px\u201d info_warna_global=\u201d{}\u201d]<br \/>\n[\/et_pb_button][\/et_pb_column_inner][\/et_pb_row_inner][et_pb_row_inner custom_padding_last_edited=&#8221;on|phone&#8221; disabled_on=&#8221;on|on|off&#8221; _builder_version=&#8221;4.16&#8243; custom_padding=&#8221;|35px|||false|false&#8221; custom_padding_tablet=&#8221;|35px||35px||true&#8221; custom_padding_phone=&#8221;&#8221; animation_direction=&#8221;top&#8221; z_index_tablet=&#8221;500&#8243; global_colors_info=&#8221;{}&#8221;][et_pb_column_inner saved_specialty_column_type=&#8221;3_4&#8243; _builder_version=&#8221;4.16&#8243; custom_padding=&#8221;|||&#8221; global_colors_info=&#8221;{}&#8221; custom_padding__hover=&#8221;|||&#8221;][et_pb_text _builder_version=&#8221;4.27.4&#8243; background_size=&#8221;initial&#8221; background_position=&#8221;top_left&#8221; background_repeat=&#8221;repeat&#8221; z_index_tablet=&#8221;500&#8243; global_colors_info=&#8221;{}&#8221;]<\/p>\n<p>Bila menggunakan materi ini untuk laporan atau presentasi, harap sertakan hal berikut:<br \/>Sumber:\u00a0<strong><em>Buku Pegangan Perawatan Klinis Progeria; Panduan untuk Keluarga dan Penyedia Layanan Kesehatan Anak-anak dengan Progeria.<\/em><\/strong><br \/>Hak cipta 2019 oleh The Progeria Research Foundation. Semua hak dilindungi undang-undang.<\/p>\n<p>Kami akan terus memperbarui materi ini seiring dengan masuknya informasi lebih lanjut. Jika Anda memiliki pertanyaan medis tertentu, silakan hubungi kami di (978) 535-2594 atau\u00a0<a href=\"mailto:info@progeriaresearch.org.\">info@progeriaresearch.org.<\/a><\/p>\n<p>Terima kasih kepada setiap anak dan keluarga yang berpartisipasi dalam proyek yang sangat penting ini, dan kepada para perawat medis serta para ahli lainnya yang berkontribusi terhadap rekomendasi ini.<\/p>\n<p>[\/et_pb_text][et_pb_text _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; hover_enabled=&#8221;0&#8243; global_colors_info=&#8221;{}&#8221; sticky_enabled=&#8221;0&#8243;]<\/p>\n<p style=\"font-weight: 400;\"><strong>Terima Kasih Kepada Penerjemah Relawan Kami<br \/><\/strong>Ucapan terima kasih khusus kepada Dr. Muneaki Matsuo yang telah mengatur penerjemahan <em>2<sup>dan<\/sup> Edisi \u2013 Buku Pegangan Bahasa Jepang<\/em>; kepada Dr. Tadashi Satoh dan staf medis Pediatri di Universitas Saga atas bantuan mereka dalam penerjemahan; dan kepada Profesor Kenji Ihara, Universitas Oita, dan Dr. Rika Kozaki, Pusat Kesehatan dan Perkembangan Anak Nasional, untuk mengoreksi.<\/p>\n<p>Ucapan terima kasih dan penghargaan tulus kami kepada Dr. Daniel Tanure dan Dr. Laura Cheib atas waktu dan tenaga yang mereka curahkan untuk menerjemahkan The Progeria Handbook \u2013 Edisi ke-2 ke dalam bahasa Portugis.<\/p>\n<p><span>Kami berterima kasih kepada Sammy Basso dan <a href=\"http:\/\/www.progeriaitalia.org\/ita\/index.php\" target=\"_blank\" rel=\"noopener\">Asosiasi Progeria Italia Sammy Basso<\/a> untuk mengorganisasi dan mendanai penerjemahan The Progeria Clinical Care Handbook \u2013 Edisi ke-2 ke dalam bahasa Italia, dan kepada Elise Treggia atas waktu dan upaya yang dicurahkannya untuk penerjemahan tersebut.<\/span><\/p>\n<p><span>Sekali lagi kami sampaikan terima kasih kepada Sammy Basso dan <a href=\"http:\/\/www.progeriaitalia.org\/ita\/index.php\" target=\"_blank\" rel=\"noopener\">Asosiasi Progeria Italia Sammy Basso<\/a> atas penyelenggaraan dan pendanaan penerjemahan buku The Progeria Clinical Care Handbook versi Bahasa Arab \u2013 Edisi ke-2, kepada Elise Treggia atas koordinasinya dengan jaringan penerjemahnya, dan kepada Sara Anani atas karya indahnya dalam penerjemahan ini.<\/span><\/p>\n<p><span>Terima kasih banyak kepada<\/span><span>\u00a0Jieun Lee, MD, PhD, dan staf di Rumah Sakit Universitas Inha di Incheon, Korea Selatan, yang menyiapkan terjemahan bahasa Korea dengan dukungan dari Kementerian Kesehatan dan Kesejahteraan Korea dan Institut Pengembangan Industri Kesehatan Korea.<\/span><\/p>\n<p>[\/et_pb_text][\/et_pb_column_inner][\/et_pb_row_inner][et_pb_row_inner custom_padding_last_edited=\u201don|phone\u201d disabled_on=\u201d||on\u201d admin_label=\u201dBaris (Hanya Seluler)\u201d _builder_version=\u201d4.16\u2033 custom_padding=\u201d39.4375px|35px|12px||false|false\u201d custom_padding_tablet=\u201d|35px||35px||true\u201d custom_padding_phone=\u201d\u201d animation_direction=\u201dtop\u201d z_index_tablet=\u201d500\u2033 global_colors_info=\u201d{}\u201d][et_pb_column_inner saved_specialty_column_type=\u201d3_4\u2033 _builder_version=\u201d4.16\u2033 custom_padding=\u201d|||\u201d global_colors_info=\u201d{}\u201d custom_padding__hover=\u201d|||\u201d][et_pb_image src=\u201dhttps:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2019\/03\/english-front.jpg\u201d align_tablet=\u201dcenter\u201d align_phone=\u201d\u201d align_last_edited=\u201don|desktop\u201d admin_label=\u201dGambar sampul Bahasa Inggris (hanya untuk perangkat seluler)\u201d _builder_version=\u201d4.16\u2033 z_index_tablet=\u201d500\u2033 box_shadow_horizontal_tablet=\u201d0px\u201d box_shadow_vertical_tablet=\u201d0px\u201d box_shadow_blur_tablet=\u201d40px\u201d box_shadow_spread_tablet=\u201d0px\u201d global_colors_info=\u201d{}\u201d]<br \/>\n[\/et_pb_image][et_pb_text admin_label=\u201dTeks (hanya seluler)\u201d _builder_version=\u201d4.16\u2033 background_size=\u201dinitial\u201d background_position=\u201dtop_left\u201d background_repeat=\u201drepeat\u201d z_index_tablet=\u201d500\u2033 global_colors_info=\u201d{}\u201d]<\/p>\n<p>Karena sebagian besar perawat medis belum pernah merawat anak penderita Progeria, sering kali muncul pertanyaan tentang cara mengoptimalkan kualitas hidup melalui perawatan harian dan pengobatan medis. Untuk menjawab kebutuhan tersebut, pada bulan April 2010, PRF menerbitkan edisi pertama <em>Buku Pegangan Progeria<\/em>, untuk keluarga yang terdampak Progeria dan dokter mereka. Dari fakta kesehatan dasar hingga rekomendasi perawatan harian hingga panduan perawatan yang lengkap, buku pegangan setebal 131 halaman ini membantu menjawab banyak pertanyaan untuk anak-anak penderita Progeria di seluruh dunia.<\/p>\n<p>Pada bulan Maret 2019, PRF memperbarui dan menyunting setiap bagian dari edisi pertama buku pegangan tersebut. Beberapa perubahan terbesar pada edisi kedua mencakup bagian baru tentang genetika dan konseling genetik untuk tenaga kesehatan, dan sejumlah besar informasi baru dari studi klinis terkini yang berasal dari komunitas penelitian Progeria, termasuk informasi kardiovaskular, neurovaskular, dan endokrin baru serta rekomendasi.<\/p>\n<p>&nbsp;<\/p>\n<p>[\/et_pb_text][et_pb_button button_url=\u201dhttps:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2019\/03\/PRF_Handbook_2019_eFile.pdf\u201d url_new_window=\u201don\u201d button_text=\u201dUnduh Edisi ke-2 \u2013 Bahasa Inggris\u201d admin_label=\u201dEdisi ke-2 \u2013 Bahasa Inggris (hanya seluler)\u201d _builder_version=\u201d4.21.0\u2033 background_layout=\u201ddark\u201d custom_margin=\u201d||10px\u201d button_text_size_tablet=\u201d18\u2033 button_text_size_phone=\u201d14\u2033 button_text_size_last_edited=\u201don|ponsel\u201d z_index_tablet=\u201d500\u2033 button_text_shadow_horizontal_length_tablet=\u201d0px\u201d 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button_text_shadow_vertical_length_tablet=\u201d0px\u201d tombol_teks_bayangan_kekuatan_buram_tablet=\u201d1px\u201d kotak_bayangan_horizontal_tablet=\u201d0px\u201d kotak_bayangan_vertikal_tablet=\u201d0px\u201d kotak_bayangan_buram_tablet=\u201d40px\u201d kotak_bayangan_sebaran_tablet=\u201d0px\u201d info_warna_global=\u201d{}\u201d]<br \/>\n[\/et_pb_button][et_pb_button button_url=\u201dhttps:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2019\/09\/UPDATED-Japanese-Progeria-Handbook-Edition-2.pdf\u201d url_new_window=\u201don\u201d button_text=\u201dUnduh Edisi ke-2 \u2013 Bahasa Jepang\u201d admin_label=\u201dEdisi ke-2 \u2013 Bahasa Jepang (hanya untuk perangkat seluler)\u201d _builder_version=\u201d4.16\u2033 background_layout=\u201ddark\u201d custom_margin=\u201d||10px\u201d button_text_size_tablet=\u201d18\u2033 button_text_size_phone=\u201d14\u2033 button_text_size_last_edited=\u201don|ponsel\u201d z_index_tablet=\u201d500\u2033 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button_text_shadow_blur_strength_tablet=\u201d1px\u201d bayangan_kotak_horizontal_tablet=\u201d0px\u201d bayangan_kotak_vertikal_tablet=\u201d0px\u201d bayangan_kotak_buram_tablet=\u201d40px\u201d bayangan_kotak_sebaran_tablet=\u201d0px\u201d info_warna_global=\u201d{}\u201d]<br \/>\n[\/et_pb_button][et_pb_text admin_label=\u201dTeks (hanya seluler)\u201d _builder_version=\u201d4.16\u2033 background_size=\u201dinitial\u201d background_position=\u201dtop_left\u201d background_repeat=\u201drepeat\u201d z_index_tablet=\u201d500\u2033 global_colors_info=\u201d{}\u201d]<\/p>\n<p>Bila menggunakan materi ini untuk laporan atau presentasi, harap sertakan hal berikut:<br \/>Sumber:&nbsp;<strong><em>Buku Pegangan Progeria; Panduan untuk Keluarga dan Penyedia Layanan Kesehatan Anak-anak dengan Progeria.<\/em><\/strong><br \/>Hak cipta 2019 oleh The Progeria Research Foundation. Semua hak dilindungi undang-undang.<\/p>\n<p>Kami akan terus memperbarui materi ini seiring dengan masuknya informasi lebih lanjut. Jika Anda memiliki pertanyaan medis tertentu, silakan hubungi kami di (978) 535-2594 atau&nbsp;<a href=\"mailto:info@progeriaresearch.org.\">info@progeriaresearch.org.<\/a><\/p>\n<p>Terima kasih kepada setiap anak dan keluarga yang berpartisipasi dalam proyek yang sangat penting ini, dan kepada para perawat medis serta para ahli lainnya yang berkontribusi terhadap rekomendasi ini.<\/p>\n<p>&nbsp;<\/p>\n<p>Bahasa Indonesia: [\/et_pb_text][\/et_pb_column_inner][\/et_pb_row_inner][\/et_pb_column][\/et_pb_section][et_pb_section fb_built=\u201d1\u2033 kelas_modul=\u201dfooter\u201d _builder_version=\u201d4.21.0\u2033 warna_latar_belakang=\u201d#29327a\u201d margin_khusus=\u201d-2px|||||\u201d custom_padding=\u201d0|0px|0|0px|false|false\u201d z_index_tablet=\u201d500\u2033 border_width_top=\u201d12px\u201d border_color_top=\u201d#00b2e2\u2033 global_module=\u201d133\u2033 terkunci=\u201dmati\u201d global_colors_info=\u201d{}\u201d][et_pb_row struktur_kolom=\u201d1_4,1_4,1_2\u2033 buat_sama=\u201daktif\u201d kelas_modul=\u201d et_pb_row_lebar_penuh\u201d _builder_version=\u201d4.16\u2033 lebar=\u201d89%\u201d lebar_tablet=\u201d80%\u201d lebar_ponsel=\u201d\u201d lebar_terakhir_diedit=\u201daktif|desktop\u201d lebar_maks=\u201d89%\u201d lebar_tablet=\u201d80%\u201d lebar_ponsel_maks=\u201d\u201d max_width_last_edited=\u201dpada|desktop\u201d z_index_tablet=\u201d500\u2033 buat_lebar_penuh=\u201daktif\u201d unit_lebar=\u201dnonaktif\u201d persentase_lebar_khusus=\u201d100%\u201d info_warna_global=\u201d{}\u201d][et_pb_column jenis=\u201d1_4\u2033 _builder_version=\u201d4.16\u2033 bantalan_khusus=\u201d|||\u201d global_colors_info=\u201d{}\u201d custom_padding__hover=\u201d|||\u201d][et_pb_cta button_url=\u201dhttps:\/\/lp.constantcontactpages.com\/sl\/88gWWwz\u201d button_text=\u201dDaftar Sekarang\u201d admin_label=\u201dDaftar untuk Pembaruan\u201d module_class=\u201dsign-btn\u201d _builder_version=\u201d4.27.4\u2033 header_font_size=\u201d25px\u201d background_color=\u201d#29327a\u201d animation_style=\u201dslide\u201d animation_direction=\u201dleft\u201d animation_intensity_slide=\u201d25%\u201d link_option_url=\u201dhttps:\/\/lp.constantcontactpages.com\/sl\/88gWWwz\u201d header_font_size_tablet=\u201d\u201d header_font_size_phone=\u201d30px\u201d header_font_size_last_edited=\u201don|desktop\u201d z_index_tablet=\u201d500\u2033 border_radii=\u201daktif|25px|25px|25px|25px\u201d global_colors_info=\u201d{}\u201d button_bg_color__hover_enabled=\u201daktif\u201d button_bg_color__hover=\u201d#8fd2ed\u201d button_border_color__hover_enabled=\u201daktif\u201d]<\/p>\n<h2>Mendaftar<\/h2>\n<h2>untuk Kami<\/h2>\n<h2>Pembaruan!<\/h2>\n<p>[\/et_pb_cta][\/et_pb_column][et_pb_column type=\u201d1_4\u2033 _builder_version=\u201d4.16\u2033 custom_padding=\u201d|||\u201d global_colors_info=\u201d{}\u201d custom_padding__hover=\u201d|||\u201d][et_pb_cta button_url=\u201dhttps:\/\/progeriaresearch.donorsupport.co\/-\/XZHJVWZR\u201d button_text=\u201dDonasi Sekarang\u201d admin_label=\u201dBersama-sama, kita akan menemukan obatnya!\u201d modul_kelas=\u201dtanda-btn\u201d _builder_version=\u201d4.16\u2033 ukuran_font_header=\u201d25px\u201d warna_latar belakang=\u201d#29327a\u201d gaya_animasi=\u201dslide\u201d arah_animasi=\u201dkiri\u201d intensitas_animasi_slide=\u201d25%\u201d ukuran_font_header_tablet=\u201d\u201d ukuran_font_header_phone=\u201d30px\u201d ukuran_font_header_last_edited=\u201dpada|desktop\u201d ukuran_font_body_tablet=\u201d\u201d ukuran_font_body_phone=\u201d\u201d ukuran_font_body_last_edited=\u201dpada|desktop\u201d z_index_tablet=\u201d500\u2033 radius_batas=\u201dpada|25px|25px|25px|25px\u201d info_warna_global=\u201d{}\u201d warna_latar_belakang_tombol__hover_enabled=\u201dpada\u201d tombol_warna_latar_belakang_hover=\u201d#8fd2ed\u201d tombol_warna_batas_belakang_hover_diaktifkan=\u201daktif\u201d]<\/p>\n<h2>Bersama-sama, kita<\/h2>\n<h2><em>AKAN<\/em><\/h2>\n<h2>temukan obatnya!<\/h2>\n<p>[\/et_pb_cta][\/et_pb_column][et_pb_column tipe=\u201d1_2\u2033 _builder_version=\u201d4.16\u2033 bantalan_khusus=\u201d|||\u201d global_colors_info=\u201d{}\u201d custom_padding__hover=\u201d|||\u201d][et_pb_image src=\u201dhttps:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2025\/05\/2025-strip-for-website-footer-no-years.png\u201d title_text=\u201dstrip 2025 untuk footer situs web tanpa tahun\u201d _builder_version=\u201d4.27.4\u2033 _module_preset=\u201ddefault\u201d custom_margin=\u201d35px||||false|false\u201d global_colors_info=\u201d{}\u201d][\/et_pb_image][\/et_pb_column][\/et_pb_row][\/et_pb_section]<\/p>","protected":false},"excerpt":{"rendered":"<p>[et_pb_section fb_built=&#8221;1&#8243; fullwidth=&#8221;on&#8221; disabled_on=&#8221;off|off|off&#8221; _builder_version=&#8221;4.16&#8243; border_width_bottom=&#8221;55px&#8221; border_color_bottom=&#8221;#29327a&#8221; locked=&#8221;off&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_fullwidth_header _builder_version=&#8221;4.24.3&#8243; title_font=&#8221;||||||||&#8221; title_font_size=&#8221;55&#8243; background_color=&#8221;#29327a&#8221; background_image=&#8221;https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2019\/05\/parents-doctors-header-v4.jpg&#8221; custom_padding=&#8221;9vw||9vw||true&#8221; custom_padding_tablet=&#8221;&#8221; custom_padding_phone=&#8221;|56px||&#8221; custom_padding_last_edited=&#8221;on|desktop&#8221; title_font_size_tablet=&#8221;45px&#8221; title_font_size_phone=&#8221;40px&#8221; title_font_size_last_edited=&#8221;on|phone&#8221; z_index_tablet=&#8221;500&#8243; custom_css_main_element=&#8221;background-position: center 18% !important;&#8221; global_colors_info=&#8221;{}&#8221;] Progeria Clinical Care Handbook &nbsp; [\/et_pb_fullwidth_header][\/et_pb_section][et_pb_section fb_built=&#8221;1&#8243; use_custom_gutter=&#8221;on&#8221; gutter_width=&#8221;1&#8243; specialty=&#8221;on&#8221; padding_left_1=&#8221;35px&#8221; padding_left_2=&#8221;35px&#8221; padding_2_tablet=&#8221;|||0px&#8221; padding_2_phone=&#8221;|||0px&#8221; padding_2_last_edited=&#8221;on|desktop&#8221; module_class_1=&#8221;sidebar-secondary-nav&#8221; module_class=&#8221;handprint-bg&#8221; _builder_version=&#8221;4.16&#8243; background_image=&#8221;https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2019\/04\/blue-handprint-only.png&#8221; parallax=&#8221;on&#8221; parallax_method=&#8221;off&#8221; inner_width=&#8221;100%&#8221; inner_max_width=&#8221;100%&#8221; custom_padding=&#8221;0|0px|54px|0px|false|false&#8221; z_index_tablet=&#8221;500&#8243; border_width_top=&#8221;10px&#8221; border_color_top=&#8221;#8fd2ed&#8221; use_custom_width=&#8221;on&#8221; [&hellip;]<\/p>","protected":false},"author":1,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_et_pb_use_builder":"on","_et_pb_old_content":"\t\t\t\t[vc_row][vc_column][vc_custom_heading text=\"Patient Care and Handbook\" font_container=\"tag:h1|text_align:center\" use_theme_fonts=\"yes\"][vc_column_text]\r\n\r\n<img class=\"alignright size-full wp-image-4629\" src=\"https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2019\/03\/english-front.jpg\" alt=\"\" width=\"200\" height=\"257\" \/>Because most medical caretakers have never treated a child with Progeria, there are often questions about how to optimize quality of life through daily care and medical treatment. To answer that need, in April 2010, PRF published\u00a0the first edition of <em>The Progeria Handbook<\/em>, for families touched by Progeria and their doctors. \u00a0From basic health facts to daily care recommendations to extensive treatment guidelines, this 131-page handbook helps answer many questions for children with Progeria throughout the world.\r\n\r\nIn March 2019, PRF updated and edited every section of the first edition of the handbook. Some of the biggest changes to the second edition include a new section on genetics and genetic counseling for the health professional, and a plethora of new information from recent clinical studies stemming from the Progeria research community, including new cardiovascular, neurovascular and endocrine information as well as recommendations.\r\n\r\n<img src=\"https:\/\/www.progeriaresearch.org\/assets\/images\/iconPDF.gif\" alt=\"\" width=\"34\" height=\"20\" \/> <a href=\"https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2019\/03\/PRF_Handbook_2019_eFile.pdf\" target=\"_blank\" rel=\"noopener noreferrer\">Click here<\/a> to download the second edition of the Handbook in English.\r\n\r\nWhen using these materials for reports or presentations, please include the following:\r\nSource:\u00a0<strong><em>The Progeria Handbook; A Guide for Families and Health Care Providers of Children with Progeria.<\/em><\/strong>\r\nCopyright 2019 by The Progeria Research Foundation. All rights reserved.\r\n\r\nWe will continue to update these materials as more information comes in. If you have specific medical questions, please contact us at (978) 535-2594 or\u00a0<a href=\"mailto:info@progeriaresearch.org.\">info@progeriaresearch.org.<\/a>\r\n\r\nThank you to every child and family who participates in these very important projects, and to the medical caretakers and other experts contributing to these recommendations.\r\n\r\n<hr \/>\r\n\r\nThe first edition of the handbook is available in Spanish and Portuguese versions. Translations of the second edition of the handbook in Spanish and Portuguese will be posted on this page when available.\r\n\r\n<img src=\"https:\/\/www.progeriaresearch.org\/assets\/images\/iconPDF.gif\" alt=\"\" width=\"34\" height=\"20\" \/> <a href=\"https:\/\/www.progeriaresearch.org\/assets\/files\/pdf\/Progeria_Book_r2.pdf\" target=\"_blank\" rel=\"noopener noreferrer\">Click here<\/a> to download the Portuguese version.\r\n\r\n<img src=\"https:\/\/www.progeriaresearch.org\/assets\/images\/iconPDF.gif\" alt=\"\" width=\"34\" height=\"20\" \/> <a href=\"https:\/\/www.progeriaresearch.org\/assets\/files\/pdf\/Progeria_Book_r2.pdf\" target=\"_blank\" rel=\"noopener noreferrer\">Clique aqui<\/a> para fazer o download da vers\u00e3o em Portugu\u00eas.\r\n\r\n<hr \/>\r\n\r\n<a href=\"https:\/\/www.progeriaresearch.org\/assets\/files\/pdf\/PRF%20Handbook%20Spanish.pdf\"><img src=\"https:\/\/www.progeriaresearch.org\/assets\/images\/iconPDF.gif\" alt=\"\" width=\"34\" height=\"20\" \/> <\/a><a href=\"https:\/\/www.progeriaresearch.org\/assets\/files\/pdf\/PRF%20Handbook%20Spanish.pdf\" target=\"_blank\" rel=\"noopener noreferrer\">Click here<\/a> to download the Spanish version.\r\n\r\n<a href=\"https:\/\/www.progeriaresearch.org\/assets\/files\/pdf\/PRF%20Handbook%20Spanish.pdf\"><img src=\"https:\/\/www.progeriaresearch.org\/assets\/images\/iconPDF.gif\" alt=\"\" width=\"34\" height=\"20\" \/> <\/a><a href=\"https:\/\/www.progeriaresearch.org\/assets\/files\/pdf\/PRF%20Handbook%20Spanish.pdf\" target=\"_blank\" rel=\"noopener noreferrer\">Haga clic aqui<\/a> para descargar la versi\u00f3n en espa\u00f1ol.[\/vc_column_text][\/vc_column][\/vc_row]\t\t","_et_gb_content_width":"","footnotes":"","_links_to":"","_links_to_target":""},"class_list":["post-891","page","type-page","status-publish","hentry"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v26.8 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>patient handbook | The 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