{"id":3258,"date":"2021-07-26T14:38:24","date_gmt":"2021-07-26T21:38:24","guid":{"rendered":"https:\/\/deepconnections.net\/?page_id=3258"},"modified":"2024-04-10T11:27:49","modified_gmt":"2024-04-10T18:27:49","slug":"dee-p-sibling-page","status":"publish","type":"page","link":"https:\/\/deepconnections.net\/ms_my\/dee-p-sibling-page\/","title":{"rendered":"Sokongan Adik Beradik DEE\/Epilepsi Jarang"},"content":{"rendered":"<h1>\n\t\t\t\tPerubatan\n\t\t\t<\/h1>\n\t<h3>\n\t\t\t\tMenyokong Keluarga dan Adik Beradik Jarang Epilepsi\n\t\t\t<\/h3>\n\t\t\t<p>Siblings are so often the unsung heroes of rare epilepsy families.Let&#8217;s make them feel like the stars that they are!<\/p>\t\n\t\t\t\t<img decoding=\"async\" src=\"https:\/\/deepconnections.net\/wp-content\/uploads\/2021\/07\/VIP-Sibling-Logo.png\" alt=\"VIP Sibling Logo\" itemprop=\"image\" title=\"Logo Adik Beradik VIP\" onerror=\"this.style.display='none'\"  \/>\n\t<p>All rare epilepsy families face challenges-it&#8217;s a reality of living with a rare seizure disorder. You know better than anyone that caring for a child with a rare epilepsy requires considerable energy, time, and flexibility. And that has an impact on every member of the family-including your VIP sibling. As helpful and involved as they may be with their brother or sister, VIP siblings have needs and concerns of their own. Sometimes, they feel alone.<\/p>\n\t\t\t<img decoding=\"async\" loading='false' src=\"https:\/\/deepconnections.net\/wp-content\/uploads\/2021\/07\/Painted-1.png\" alt=\"painted background\" \/>\t\t\t\n\t\t\t\t<h3>Siblings Feel It Too &#8211; Unhappiness<\/h3><p><b>47%<\/b><\/p>\n<p><b>daripada adik-beradik yang dilaporkan tidak berpuas hati kadang-kadang atau banyak masa.<\/b><\/p>\n\t\t\t<img decoding=\"async\" loading='false' src=\"https:\/\/deepconnections.net\/wp-content\/uploads\/2021\/07\/Painted-2.png\" alt=\"\" \/>\t\t\t\n\t\t\t\t<h3>Siblings Feel It Too &#8211; Depression<\/h3><p><b>35%<\/b><\/p>\n<p><b>daripada adik-beradik dewasa melaporkan sejarah rawatan untuk kemurungan klinikal.<\/b><\/p>\n\t\t\t<img decoding=\"async\" loading='false' src=\"https:\/\/deepconnections.net\/wp-content\/uploads\/2021\/07\/Painted-3.png\" alt=\"\" \/>\t\t\t\n\t\t\t\t<h3>Siblings Feel It Too &#8211; Anxiety<\/h3><p><b>79%<\/b><\/p>\n<p><b>daripada adik-beradik muda menyatakan ketakutan bahawa adik mereka mungkin meninggal dunia.<\/b><\/p>\n\t\t\t<img decoding=\"async\" loading='false' src=\"https:\/\/deepconnections.net\/wp-content\/uploads\/2021\/07\/Painted-4.png\" alt=\"\" \/>\t\t\t\n\t\t\t\t<h3>Siblings Feel It Too &#8211; Irritability<\/h3><p><b>54%<\/b><\/p>\n<p><b>daripada adik-beradik muda dilaporkan berasa cepat marah atau pemarah kadang-kadang atau banyak masa.<\/b><\/p>\n\t<p>Ramai adik beradik mengatakan mereka telah belajar untuk berasa belas kasihan dan lebih memahami orang lain yang kurang upaya. Penemuan lain menunjukkan bahawa adik-beradik selalunya boleh berasa tertekan, cemas atau takut.*<\/p>\n<br \/>\n* Satu kajian baru-baru ini dipanggil <a href=\"https:\/\/vipsibling.com\/Bailey-LD-et-al.-Psychosocial-impact-on-siblings-of-patients-with-developmental-and-epileptic-encephalopathies-Epilepsy-Behavior.pdf\" target=\"_blank\" rel=\"noopener\">Tinjauan Suara Adik Beradik<\/a> melihat kesan emosi membesar dengan saudara lelaki atau perempuan dengan epilepsi yang teruk.<br \/>\n\n\t<h3>\n\t\t\t\tBagaimana Kami Boleh Membantu\n\t\t\t<\/h3>\n\t\t\t<p>We have been honored to have collaborated over the past year with UCB, sponsors of important research on rare epilepsy siblings. Working alongside nine other patient group leaders, we have adapted the research and tools developed for the Dravet community for siblings and families of all rare epilepsies.We&#8217;re delighted to offer you these unique resources to inform and encourage your families and your amazing VIP siblings.<br \/><\/p>\t\n\t\t\t\t<img decoding=\"async\" src=\"https:\/\/deepconnections.net\/wp-content\/uploads\/2021\/07\/Parents-Caregivers-Kit.jpg\" alt=\"Parents &amp; Caregivers Kit\" itemprop=\"image\" title=\"Kit Ibu Bapa &amp; Penjaga\" onerror=\"this.style.display='none'\"  \/>\n\t<h3>\n\t\t\t\tParents &#038; Caregivers Kit\n\t\t\t<\/h3>\n\t\t\t<p>Direka oleh komuniti epilepsi yang jarang berlaku untuk membantu ibu bapa dan penjaga menyokong adik-beradik VIP mereka.<\/p>\t\n\t\t\t<a href=\"https:\/\/deepconnections.net\/ms_my\/request-form-for-parent-or-sibling-kits\/\" target=\"_blank\" rel=\"noopener\">\n\t\t\t\t\t\t\tMinta Kit Anda\n\t\t\t\t\t<\/a>\n\t\t\t\t<img decoding=\"async\" src=\"https:\/\/deepconnections.net\/wp-content\/uploads\/2021\/07\/Parents-Caregivers-Kit.jpg\" alt=\"Parents &amp; Caregivers Kit\" itemprop=\"image\" title=\"Kit Ibu Bapa &amp; Penjaga\" onerror=\"this.style.display='none'\"  \/>\n\t<h3>\n\t\t\t\tKit Adik Beradik VIP\n\t\t\t<\/h3>\n\t\t\t<p>Tersedia dalam dua versi yang sesuai dengan umur, kit ini direka khas untuk adik-beradik VIP untuk membantu mereka mengatasi dan meraikan betapa pentingnya mereka.<\/p>\t\n\t\t\t<a href=\"https:\/\/deepconnections.net\/ms_my\/request-form-for-parent-or-sibling-kits\/\" target=\"_blank\" rel=\"noopener\">\n\t\t\t\t\t\t\tMinta Kit Anda\n\t\t\t\t\t<\/a>\n\t\t\t\t<img decoding=\"async\" src=\"https:\/\/deepconnections.net\/wp-content\/uploads\/2021\/07\/Parents-Caregivers-Kit.jpg\" alt=\"Parents &amp; Caregivers Kit\" itemprop=\"image\" title=\"Kit Ibu Bapa &amp; Penjaga\" onerror=\"this.style.display='none'\"  \/>\n\t<h3>\n\t\t\t\tTools &#038; Resources\n\t\t\t<\/h3>\n\t\t\t<p>Akses di hujung jari anda kepada semua komponen bercetak Kit Ibu Bapa &amp; Pengasuh, Kit Adik Beradik VIP dan banyak lagi!<\/p>\t\n\t\t\t<a href=\"https:\/\/deepconnections.net\/ms_my\/request-form-for-parent-or-sibling-kits\/\" target=\"_blank\" rel=\"noopener\">\n\t\t\t\t\t\t\tMinta Kit Anda\n\t\t\t\t\t<\/a>\n<h2>\n\t\t<a href=\"https:\/\/vipsibling.com\/parents-caregivers\/tools-resources\/\" title=\"KIt tidak tersedia pada masa ini untuk penghantaran ke luar Amerika Syarikat tetapi kebanyakan sumber boleh dimuat turun di sini.\" target=\"_self\" rel=\"noopener\">\n\t\tKIt tidak tersedia pada masa ini untuk penghantaran ke luar Amerika Syarikat tetapi kebanyakan sumber boleh dimuat turun di sini.\n\t\t<\/a>\n\t<\/h2>\n<h2>\n\t\tPautan Kepada Sumber Tambahan\n\t<\/h2>\n\t<p><b>Tawaran Yayasan Epilepsi <\/b><a href=\"https:\/\/www.epilepsy.com\/make-difference\/get-involved\/kids-crew%22lepsy.com\/make-difference\/get-involved\/kids-crew\"><b>Kanak-kanak Crew<\/b><\/a> untuk kanak-kanak dari mana-mana tahap keupayaan yang mempunyai, atau ingin menyokong, seseorang yang menghidap epilepsi; Hubungi: Jon Scheinman jscheinman@efa.org<\/p>\n<p>&nbsp;<\/p>\n<p><a href=\"https:\/\/autismsciencefoundation.org\/resources\/sams-sibs-stick-together\/\"><b>Sam&#8217;s Sibs Stick Together<\/b><\/a> &#8211; series on and by sibs sponsored by the Autism Science Foundation and Els for Autism\u00a0\u00a0<\/p>\n<p>Hubungi: Alicia Halladay di ahalladay@autismsciencefoundation.org<\/p>\n<p>&nbsp;<\/p>\n<p><strong>Harapan untuk HIE<\/strong> mempunyai kumpulan adik-beradik super di mana keluarga boleh menubuhkan adik-beradik sebaya mereka dalam rakan pena, merujuk orang kepada Projek Sokongan Adik Beradik<\/p>\n<p>Hubungi: Betsy Pilon, Betsy@hopeforHIE.org, 248-703-6914<\/p>\n\n<p><a href=\"https:\/\/siblingsupport.org\/\"><b>Projek Sokongan Adik Beradik<\/b><\/a> ialah program kebangsaan yang didedikasikan untuk kebimbangan sepanjang hayat dan sentiasa berubah bagi jutaan saudara dan saudari orang yang mempunyai keperluan pembangunan, kesihatan dan kesihatan mental yang istimewa. Inisiatif termasuk: Acara Sibshops, Komuniti Dalam Talian untuk Kumpulan Perangkaian Saudara dan Saudari untuk adik-beradik dan ahli keluarga lain, Penerbitan dan Bengkel dan Latihan Hubungi: | (425) 362-6421 | Emily Holl, Pengarah; info@siblingsupportproject.org<\/p>\n\n<p><b>Banyak Pusat Sumber Keluarga Permulaan Awal dan Pusat Latihan &amp; Maklumat Ibu Bapa (PCIT),<\/b> (funded by the federal Individuals w\/Disabilities Education Act &#8211; IDEA) in each state provide parent-to-parent support including sibling support as well. The organization in each state may be affiliated with Parent-to-Parent USA and\/or Family Voices.\u00a0\u00a0<\/p>\n\n<p>Pautan program untuk mengenal pasti ahli gabungan negeri:<\/p>\n<p><a href=\"https:\/\/www.p2pusa.org\/parents\/\">Ibu Bapa kepada Ibu Bapa AS<\/a><\/p>\n<p><a href=\"https:\/\/familyvoices.org\/affiliates\/\">Suara Keluarga\u00a0<\/a>\u00a0<\/p>\n\t<h1>\n\t\t\t\tKenyataan privasi\n\t\t\t<\/h1>\n\t\t\t<p>Kami menyedari bahawa privasi anda adalah penting. Kenyataan privasi kami menggariskan jenis maklumat peribadi yang kami terima dan kumpulkan apabila anda menggunakan tapak web ini, serta beberapa langkah yang kami ambil untuk melindungi maklumat. <a href=\"https:\/\/deepconnections.net\/ms_my\/privacy-policy\/\" target=\"_blank\" rel=\"noopener\">Sila baca lebih lanjut di sini.<\/a><\/p>","protected":false},"excerpt":{"rendered":"<p>Medical Supporting Rare Epilepsy Families and Siblings Siblings are so often the unsung heroes of rare epilepsy families.Let&#8217;s make them feel like the stars that they are! All rare epilepsy&hellip;<\/p>","protected":false},"author":4,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_EventAllDay":false,"_EventTimezone":"","_EventStartDate":"","_EventEndDate":"","_EventStartDateUTC":"","_EventEndDateUTC":"","_EventShowMap":false,"_EventShowMapLink":false,"_EventURL":"","_EventCost":"","_EventCostDescription":"","_EventCurrencySymbol":"","_EventCurrencyCode":"","_EventCurrencyPosition":"","_EventDateTimeSeparator":"","_EventTimeRangeSeparator":"","_EventOrganizerID":[],"_EventVenueID":[],"_OrganizerEmail":"","_OrganizerPhone":"","_OrganizerWebsite":"","_VenueAddress":"","_VenueCity":"","_VenueCountry":"","_VenueProvince":"","_VenueState":"","_VenueZip":"","_VenuePhone":"","_VenueURL":"","_VenueStateProvince":"","_VenueLat":"","_VenueLng":"","_VenueShowMap":false,"_VenueShowMapLink":false,"footnotes":""},"class_list":["post-3258","page","type-page","status-publish","hentry"],"yoast_head":"<!-- This site is optimized with the Yoast SEO Premium plugin v27.1 (Yoast SEO v28.2) - 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