{"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\/is_is\/dee-p-sibling-page\/","title":{"rendered":"DEE\/Sjaldan flogaveiki systkinastu\u00f0ningur"},"content":{"rendered":"<h1>\n\t\t\t\tL\u00e6knisfr\u00e6\u00f0ilegt\n\t\t\t<\/h1>\n\t<h3>\n\t\t\t\tStu\u00f0ningur vi\u00f0 fj\u00f6lskyldur og systkini me\u00f0 sjaldg\u00e6fum flogaveiki\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=\"VIP systkinamerki\" 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>systkina s\u00f6g\u00f0ust vera \u00f3\u00e1n\u00e6g\u00f0 stundum e\u00f0a oft.<\/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>fullor\u00f0inna systkina greindu fr\u00e1 s\u00f6gu um me\u00f0fer\u00f0 vi\u00f0 kl\u00edn\u00edsku \u00feunglyndi.<\/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>ungra systkina l\u00fdstu \u00f3tta vi\u00f0 a\u00f0 systkini \u00feeirra g\u00e6tu d\u00e1i\u00f0.<\/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>ungra systkina s\u00f6g\u00f0ust vera pirru\u00f0 e\u00f0a pirru\u00f0 stundum e\u00f0a oft.<\/b><\/p>\n\t<p>M\u00f6rg systkini segjast hafa l\u00e6rt a\u00f0 finna til samkenndar og vera me\u00f0 meiri skilning \u00e1 \u00f6\u00f0rum sem eru f\u00f6tlu\u00f0. A\u00f0rar ni\u00f0urst\u00f6\u00f0ur s\u00fdndu a\u00f0 systkini geta oft fundi\u00f0 fyrir stressi, kv\u00ed\u00f0a e\u00f0a \u00f3tta.*<\/p>\n<br \/>\n* N\u00fdleg ranns\u00f3kn sem heitir <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\">R\u00f6dd k\u00f6nnun systkina<\/a> horft \u00e1 tilfinningaleg \u00e1hrif \u00feess a\u00f0 alast upp me\u00f0 br\u00f3\u00f0ur e\u00f0a systur me\u00f0 alvarlega flogaveiki.<br \/>\n\n\t<h3>\n\t\t\t\tHvernig vi\u00f0 getum hj\u00e1lpa\u00f0\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=\"Foreldra- og um\u00f6nnunarsett\" 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>Hanna\u00f0 af sjaldg\u00e6fu flogaveikisamf\u00e9laginu til a\u00f0 hj\u00e1lpa foreldrum og um\u00f6nnunara\u00f0ilum a\u00f0 sty\u00f0ja VIP systkini s\u00edn.<\/p>\t\n\t\t\t<a href=\"https:\/\/deepconnections.net\/is_is\/request-form-for-parent-or-sibling-kits\/\" target=\"_blank\" rel=\"noopener\">\n\t\t\t\t\t\t\tBi\u00f0ji\u00f0 um setti\u00f0 \u00feitt\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=\"Foreldra- og um\u00f6nnunarsett\" onerror=\"this.style.display='none'\"  \/>\n\t<h3>\n\t\t\t\tVIP systkinasett\n\t\t\t<\/h3>\n\t\t\t<p>\u00deessi p\u00f6kk eru f\u00e1anleg \u00ed tveimur \u00fatg\u00e1fum sem h\u00e6fir aldri og eru s\u00e9rstaklega h\u00f6nnu\u00f0 fyrir VIP systkini til a\u00f0 hj\u00e1lpa \u00feeim a\u00f0 takast \u00e1 vi\u00f0 og fagna hversu mikilv\u00e6g \u00feau eru.<\/p>\t\n\t\t\t<a href=\"https:\/\/deepconnections.net\/is_is\/request-form-for-parent-or-sibling-kits\/\" target=\"_blank\" rel=\"noopener\">\n\t\t\t\t\t\t\tBi\u00f0ji\u00f0 um setti\u00f0 \u00feitt\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=\"Foreldra- og um\u00f6nnunarsett\" 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>A\u00f0gangur innan seilingar a\u00f0 \u00f6llum prentu\u00f0um hlutum foreldra- og um\u00f6nnunarsettsins, VIP systkinasettanna og fleira!<\/p>\t\n\t\t\t<a href=\"https:\/\/deepconnections.net\/is_is\/request-form-for-parent-or-sibling-kits\/\" target=\"_blank\" rel=\"noopener\">\n\t\t\t\t\t\t\tBi\u00f0ji\u00f0 um setti\u00f0 \u00feitt\n\t\t\t\t\t<\/a>\n<h2>\n\t\t<a href=\"https:\/\/vipsibling.com\/parents-caregivers\/tools-resources\/\" title=\"Kits eru ekki f\u00e1anleg til sendingar utan Bandar\u00edkjanna eins og er en flest \u00farr\u00e6\u00f0i er h\u00e6gt a\u00f0 hla\u00f0a ni\u00f0ur h\u00e9r.\" target=\"_self\" rel=\"noopener\">\n\t\tKits eru ekki f\u00e1anleg til sendingar utan Bandar\u00edkjanna eins og er en flest \u00farr\u00e6\u00f0i er h\u00e6gt a\u00f0 hla\u00f0a ni\u00f0ur h\u00e9r.\n\t\t<\/a>\n\t<\/h2>\n<h2>\n\t\tTenglar \u00e1 vi\u00f0b\u00f3tarau\u00f0lindir\n\t<\/h2>\n\t<p><b>Epilepsy Foundation b\u00fd\u00f0ur upp \u00e1 <\/b><a href=\"https:\/\/www.epilepsy.com\/make-difference\/get-involved\/kids-crew%22lepsy.com\/make-difference\/get-involved\/kids-crew\"><b>Kids Crew<\/b><\/a> fyrir b\u00f6rn \u00e1 hva\u00f0a getustigi sem er sem hafa e\u00f0a vilja sty\u00f0ja einhvern me\u00f0 flogaveiki; Tengili\u00f0ur: 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>Tengili\u00f0ur: Alicia Halladay \u00e1 ahalladay@autismsciencefoundation.org<\/p>\n<p>&nbsp;<\/p>\n<p><strong>Von \u00e1 HIE<\/strong> er me\u00f0 ofursystkinah\u00f3p \u00fear sem fj\u00f6lskyldur geta sett upp systkini s\u00edn \u00e1 sama aldri \u00ed pennavinum, v\u00edsar f\u00f3lki \u00e1 Systkinastu\u00f0ningsverkefni\u00f0<\/p>\n<p>Tengili\u00f0ur: Betsy Pilon, Betsy@hopeforHIE.org, 248-703-6914<\/p>\n\n<p><a href=\"https:\/\/siblingsupport.org\/\"><b>Systkinastu\u00f0ningsverkefni\u00f0<\/b><\/a> er innlend dagskr\u00e1 tileinku\u00f0 \u00e6vilangum og s\u00edbreytilegum \u00e1hyggjum millj\u00f3na br\u00e6\u00f0ra og systra f\u00f3lks me\u00f0 s\u00e9rstakar \u00feroska-, heilsu- og ge\u00f0heilbrig\u00f0is\u00fearfir. Frumkv\u00e6\u00f0i eru me\u00f0al annars: Sibshops vi\u00f0bur\u00f0ir, Netsamf\u00e9l\u00f6g fyrir br\u00e6\u00f0ur og systur neth\u00f3pa fyrir systkini og a\u00f0ra fj\u00f6lskyldume\u00f0limi, \u00fatg\u00e1fur og vinnustofur og \u00fej\u00e1lfun Tengili\u00f0ur: | (425) 362-6421 | Emily Holl, leikstj\u00f3ri; info@siblingsupportproject.org<\/p>\n\n<p><b>Fj\u00f6lmargar fj\u00f6lskyldumi\u00f0st\u00f6\u00f0var og foreldra\u00fej\u00e1lfunar- og uppl\u00fdsingami\u00f0st\u00f6\u00f0var (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>Forritstenglar til a\u00f0 bera kennsl \u00e1 a\u00f0ildarr\u00edki r\u00edkisins:<\/p>\n<p><a href=\"https:\/\/www.p2pusa.org\/parents\/\">Foreldri til foreldris \u00ed Bandar\u00edkjunum<\/a><\/p>\n<p><a href=\"https:\/\/familyvoices.org\/affiliates\/\">Fj\u00f6lskylduraddir\u00a0<\/a>\u00a0<\/p>\n\t<h1>\n\t\t\t\tPers\u00f3nuverndaryfirl\u00fdsing\n\t\t\t<\/h1>\n\t\t\t<p>Vi\u00f0 gerum okkur grein fyrir \u00fev\u00ed a\u00f0 fri\u00f0helgi \u00fe\u00edna er mikilv\u00e6g. Pers\u00f3nuverndaryfirl\u00fdsing okkar l\u00fdsir tegundum pers\u00f3nuuppl\u00fdsinga sem vi\u00f0 f\u00e1um og s\u00f6fnum \u00feegar \u00fe\u00fa notar \u00feessa vefs\u00ed\u00f0u, auk nokkurra a\u00f0ger\u00f0a sem vi\u00f0 t\u00f6kum til a\u00f0 vernda uppl\u00fdsingar. <a href=\"https:\/\/deepconnections.net\/is_is\/privacy-policy\/\" target=\"_blank\" rel=\"noopener\">Vinsamlegast lestu meira h\u00e9r.<\/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 v28.3) - https:\/\/yoast.com\/product\/yoast-seo-premium-wordpress\/ -->\n<title>DEE\/Rare Epilepsy Sibling Support - DEE-P Information Resource Center<\/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:\/\/deepconnections.net\/is_is\/dee-p-sibling-page\/\" \/>\n<meta property=\"og:locale\" content=\"is_IS\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"DEE\/Rare Epilepsy Sibling Support\" \/>\n<meta property=\"og:description\" content=\"Medical Supporting Rare Epilepsy Families and Siblings Siblings are so often the unsung heroes of rare epilepsy families.Let&#039;s make them feel like the\" \/>\n<meta property=\"og:url\" content=\"https:\/\/deepconnections.net\/is_is\/dee-p-sibling-page\/\" \/>\n<meta property=\"og:site_name\" content=\"DEE-P Information Resource Center\" \/>\n<meta property=\"article:publisher\" content=\"https:\/\/www.facebook.com\/DEEPConnectionsEpilepsy\" \/>\n<meta property=\"article:modified_time\" content=\"2024-04-10T18:27:49+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/deepconnections.net\/wp-content\/uploads\/2021\/07\/VIP-Sibling-Logo.png\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"Est. reading time\" \/>\n\t<meta name=\"twitter:data1\" content=\"5 minutes\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\\\/\\\/schema.org\",\"@graph\":[{\"@type\":\"WebPage\",\"@id\":\"https:\\\/\\\/deepconnections.net\\\/dee-p-sibling-page\\\/\",\"url\":\"https:\\\/\\\/deepconnections.net\\\/dee-p-sibling-page\\\/\",\"name\":\"DEE\\\/Rare Epilepsy Sibling Support - 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