{"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\/es_ar\/dee-p-sibling-page\/","title":{"rendered":"DEE\/Rare Epilepsy Sibling Support"},"content":{"rendered":"<h1>\n\t\t\t\tM\u00e9dico\n\t\t\t<\/h1>\n\t<h3>\n\t\t\t\tSupporting Rare Epilepsy Families and Siblings\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 Sibling Logo\" 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>of siblings reported being unhappy sometimes or a lot of the time.<\/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>of adult siblings reported a history of treatment for clinical depression.<\/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>of young siblings expressed fear that their sibling might die.<\/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>of young siblings reported feeling irritable or grumpy sometimes or a lot of the time.<\/b><\/p>\n\t<p>Many siblings say they have learned to feel compassion and are more understanding of others who are disabled. Other findings showed that siblings can often feel stressed, anxious, or fearful.*<\/p>\n<br \/>\n* A recent study called the <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\">Siblings Voices Survey<\/a> looked at the emotional impact of growing up with a brother or sister with severe epilepsy.<br \/>\n\n\t<h3>\n\t\t\t\tHow We Can Help\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=\"Parents &amp; Caregivers Kit\" 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>Designed by the rare epilepsy community to help parents and caregivers support their VIP siblings.<\/p>\t\n\t\t\t<a href=\"https:\/\/deepconnections.net\/es_ar\/request-form-for-parent-or-sibling-kits\/\" target=\"_blank\" rel=\"noopener\">\n\t\t\t\t\t\t\tRequest Your Kit\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=\"Parents &amp; Caregivers Kit\" onerror=\"this.style.display='none'\"  \/>\n\t<h3>\n\t\t\t\tVIP Sibling Kits\n\t\t\t<\/h3>\n\t\t\t<p>Available in two age-appropriate versions, these kits are designed especially for VIP siblings to help them cope and celebrate how important they are.<\/p>\t\n\t\t\t<a href=\"https:\/\/deepconnections.net\/es_ar\/request-form-for-parent-or-sibling-kits\/\" target=\"_blank\" rel=\"noopener\">\n\t\t\t\t\t\t\tRequest Your Kit\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=\"Parents &amp; Caregivers Kit\" 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>Access at your fingertips to all printed components of the Parents &amp; Caregivers Kit, VIP Sibling Kits, and more!<\/p>\t\n\t\t\t<a href=\"https:\/\/deepconnections.net\/es_ar\/request-form-for-parent-or-sibling-kits\/\" target=\"_blank\" rel=\"noopener\">\n\t\t\t\t\t\t\tRequest Your Kit\n\t\t\t\t\t<\/a>\n<h2>\n\t\t<a href=\"https:\/\/vipsibling.com\/parents-caregivers\/tools-resources\/\" title=\"KIts are not currently available for shipping outside of the United States but most resources are downloadable here.\" target=\"_self\" rel=\"noopener\">\n\t\tKIts are not currently available for shipping outside of the United States but most resources are downloadable here.\n\t\t<\/a>\n\t<\/h2>\n<h2>\n\t\tLinks To Additional Resources\n\t<\/h2>\n\t<p><b>Epilepsy Foundation offers <\/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> for children of any ability level who have, or want to support, someone with epilepsy; Contact: 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>Contact:\u00a0 Alicia Halladay at ahalladay@autismsciencefoundation.org<\/p>\n<p>&nbsp;<\/p>\n<p><strong>Hope for HIE<\/strong> has a super sibs group where families can set up their same age siblings in penpals, refers people to Sibling Support Project<\/p>\n<p>Contact: Betsy Pilon, Betsy@hopeforHIE.org, 248-703-6914<\/p>\n\n<p><a href=\"https:\/\/siblingsupport.org\/\"><b>El proyecto de apoyo a hermanos<\/b><\/a> is a national program dedicated to the life-long and ever-changing concerns of millions of brothers and sisters of people with special developmental, health, and mental health needs. Initiatives include: Sibshops events,\u00a0 Online Communities for Brothers and Sisters networking groups for siblings and other family members, Publications, and Workshops and Training\u00a0 Contact: | (425) 362-6421 | Emily Holl, Director; info@siblingsupportproject.org<\/p>\n\n<p><b>Numerous Early Start Family Resource Centers and Parent Training &amp; Information Centers (PCITs),<\/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>Program links to identify state affiliates:<\/p>\n<p><a href=\"https:\/\/www.p2pusa.org\/parents\/\">Parent to Parent US<\/a><\/p>\n<p><a href=\"https:\/\/familyvoices.org\/affiliates\/\">Family Voices\u00a0<\/a>\u00a0<\/p>\n\t<h1>\n\t\t\t\tDeclaracion de privacidad\n\t\t\t<\/h1>\n\t\t\t<p>Reconocemos que su privacidad es importante. Nuestra declaraci\u00f3n de privacidad describe los tipos de informaci\u00f3n personal que recibimos y recopilamos cuando utiliza este sitio web, as\u00ed como algunas de las medidas que tomamos para proteger la informaci\u00f3n. <a href=\"https:\/\/deepconnections.net\/es_ar\/privacy-policy\/\" target=\"_blank\" rel=\"noopener\">Por favor lea m\u00e1s aqu\u00ed.<\/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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