{"id":10738,"date":"2024-02-27T12:12:02","date_gmt":"2024-02-27T12:12:02","guid":{"rendered":"https:\/\/www.healthnews.ie\/?p=10738"},"modified":"2024-02-29T09:16:58","modified_gmt":"2024-02-29T09:16:58","slug":"a-supportive-community-for-people-living-with-tuberous-sclerosis-complex-tsc","status":"publish","type":"post","link":"https:\/\/www.healthnews.ie\/rare-diseases\/a-supportive-community-for-people-living-with-tuberous-sclerosis-complex-tsc\/","title":{"rendered":"A supportive community for people living with tuberous sclerosis complex (TSC)"},"content":{"rendered":"\n<div style=\"background-color:#f2f2f2;color:#32373c\" class=\"wp-block-atomic-blocks-ab-profile-box round ab-has-avatar ab-font-size-14 ab-block-profile ab-profile-columns\"><div class=\"ab-profile-column ab-profile-avatar-wrap\"><div class=\"ab-profile-image-wrap\"><figure class=\"ab-profile-image-square\"><img loading=\"lazy\" decoding=\"async\" width=\"400\" height=\"400\" class=\"ab-profile-avatar wp-image-10740\" src=\"https:\/\/s3.eu-north-1.amazonaws.com\/cdn-site.mediaplanet.com\/app\/uploads\/sites\/94\/2024\/02\/07205954\/laura-enright-headshot.jpg\" alt=\"\" srcset=\"https:\/\/s3.eu-north-1.amazonaws.com\/cdn-site.mediaplanet.com\/app\/uploads\/sites\/94\/2024\/02\/07205954\/laura-enright-headshot.jpg 400w, https:\/\/s3.eu-north-1.amazonaws.com\/cdn-site.mediaplanet.com\/app\/uploads\/sites\/94\/2024\/02\/07205954\/laura-enright-headshot-125x125.jpg 125w\" sizes=\"auto, (max-width: 400px) 100vw, 400px\" \/><\/figure><\/div><\/div><div class=\"ab-profile-column ab-profile-content-wrap\"><h2 class=\"ab-profile-name\" style=\"color:#32373c\">Laura Enright<\/h2><p class=\"ab-profile-title\" style=\"color:#32373c\">TSC Ireland Committee<\/p><div class=\"ab-profile-text\"><\/div><ul class=\"ab-social-links\"><\/ul><\/div><\/div>\n\n\n\n<p><em>Raising awareness of tuberous sclerosis complex (TSC) and the importance of implementing TSC international recommendations can help those affected.<\/em><\/p>\n\n\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\"\/>\n\n\n\n<p><a href=\"https:\/\/tscireland.org\/tsc-diagnostic-criteria-surveillance-and-management-recommendations\/\" target=\"_blank\" rel=\"noreferrer noopener\">Tuberous sclerosis complex (TSC)<\/a> is a lifelong disease causing non-cancerous tumours to grow in organs including the brain, kidneys, heart, lungs and skin. There is no cure, but treatments exist. TSC Ireland supports patients and families and promotes the implementation of international TSC consensus recommendations and coordinated care.<\/p>\n\n\n<div id=\"healt-311302522\"><div class=\"healt-adlabel\">Advertisements<\/div><div id=\"healt-522881442\" style=\"margin-top: 30px;margin-bottom: 30px;\"><a data-no-instant=\"1\" href=\"https:\/\/tscireland.org\/news\/\" rel=\"noopener\" class=\"a2t-link\" target=\"_blank\" aria-label=\"TSC desk\"><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/s3.eu-north-1.amazonaws.com\/cdn-site.mediaplanet.com\/app\/uploads\/sites\/94\/2024\/02\/07205948\/TSC-desk-1.jpg\" alt=\"\"  width=\"750\" height=\"250\"   \/><\/a><\/div><\/div>\n\n\n<h2 class=\"wp-block-heading\" id=\"h-understanding-the-impact-of-tsc\"><strong>Understanding the impact of TSC<\/strong><\/h2>\n\n\n\n<p>Approximately 1 in 6,000 are born with TSC globally, and around 700 people in Ireland are affected. Laura Enright, <a href=\"https:\/\/tscireland.org\/tsc-diagnostic-criteria-surveillance-and-management-recommendations\/\" target=\"_blank\" rel=\"noreferrer noopener\">TSC Ireland<\/a> Committee Member whose five-year-old daughter has the condition, says: \u201cSome people may be mildly impacted while the burden of disease for others can be significant.\u201d Around 80% of people can have epilepsy and other neurological problems including behavioural issues, intellectual disability and ADHD while 50% may have autism. Lung and kidney disease is also frequently found.<\/p>\n\n\n\n<blockquote class=\"wp-block-quote is-layout-flow wp-block-quote-is-layout-flow\">\n<p>Approximately 1 in 6,000 are born with TSC globally, <br>and around 700 people in Ireland are affected.<\/p>\n<\/blockquote>\n\n\n\n<h2 class=\"wp-block-heading\" id=\"h-community-for-people-affected-by-tsc\"><strong>Community for people affected by TSC<\/strong><\/h2>\n\n\n\n<p>TSC Ireland, founded by parents in 2015, raises awareness of TSC and provides <a href=\"https:\/\/tscireland.org\/tsc-diagnostic-criteria-surveillance-and-management-recommendations\/\" target=\"_blank\" rel=\"noreferrer noopener\">support and information<\/a> to those affected. It is a vibrant community with family days, conferences, webinars, websites and social media platforms where people offer each other constant support and share experiences.<\/p>\n\n\n<div id=\"healt-1650473381\"><div class=\"healt-adlabel\">Advertisements<\/div><div id=\"healt-252104947\" style=\"margin-top: 30px;margin-bottom: 30px;\"><a data-no-instant=\"1\" href=\"https:\/\/tscireland.org\/what-is-tsc\/\" rel=\"noopener\" class=\"a2t-link\" target=\"_blank\" aria-label=\"TSC desk\"><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/s3.eu-north-1.amazonaws.com\/cdn-site.mediaplanet.com\/app\/uploads\/sites\/94\/2024\/02\/07205948\/TSC-desk-1.jpg\" alt=\"\"  width=\"750\" height=\"250\"   \/><\/a><\/div><\/div>\n\n\n<h2 class=\"wp-block-heading\" id=\"h-international-tsc-consensus-recommendations\"><strong>International TSC consensus recommendations<\/strong><\/h2>\n\n\n\n<p>\u201cWe want to inform people about the international TSC consensus recommendations and the importance of surveillance and monitoring,\u201d adds Enright. These were compiled by global TSC experts to optimise care for TSC patients universally. Coordinated care in a centre of excellence is recommended, however, patients in The Republic of Ireland have no such centre. \u201cWe are collaborating with clinicians to achieve this goal,\u201d says Enright.<\/p>\n\n\n\n<p>\u201cTSC is a very unpredictable disease. However, with information and support, people can lead the best life they could with TSC rather than focus on it being an overwhelming disease, over which they have no control.\u201d Within TSC Ireland, you will find a passionate, committed community empowering its members to live their best lives.<\/p>\n\n\n<!DOCTYPE html PUBLIC \"-\/\/W3C\/\/DTD HTML 4.0 Transitional\/\/EN\" \"http:\/\/www.w3.org\/TR\/REC-html40\/loose.dtd\">\n<html><body><div style=\"text-align:center\" class=\"wp-block-atomic-blocks-ab-button ab-block-button\"><a href=\"https:\/\/tscireland.org\/tsc-diagnostic-criteria-surveillance-and-management-recommendations\/\" target=\"_blank\" rel=\"noopener noreferrer\" class=\"ab-button ab-button-shape-rounded ab-button-size-medium fb-pixel\" style=\"color:#ffffff;background-color:#00ac91\">Click here to learn more<\/a><\/div>\n<\/body><\/html>\n","protected":false},"excerpt":{"rendered":"<p>Raising awareness of tuberous sclerosis complex (TSC) and the importance of implementing TSC international recommendations can help those affected. Tuberous sclerosis complex (TSC) is a lifelong disease causing non-cancerous tumours to grow in organs including the brain, kidneys, heart, lungs and skin. There is no cure, but treatments exist. TSC Ireland supports patients and families &hellip; <a href=\"https:\/\/www.healthnews.ie\/rare-diseases\/a-supportive-community-for-people-living-with-tuberous-sclerosis-complex-tsc\/\">Continued<\/a><\/p>\n","protected":false},"author":91,"featured_media":10757,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[5778],"tags":[5887],"class_list":["post-10738","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-rare-diseases","tag-rare-diseases-q1-2024"],"acf":[],"featured_image_src":"https:\/\/s3.eu-north-1.amazonaws.com\/cdn-site.mediaplanet.com\/app\/uploads\/sites\/94\/2024\/02\/07205950\/PHOTO-2023-11-28-09-04-50-1-600x400.jpg","featured_image_src_square":"https:\/\/s3.eu-north-1.amazonaws.com\/cdn-site.mediaplanet.com\/app\/uploads\/sites\/94\/2024\/02\/07205950\/PHOTO-2023-11-28-09-04-50-1-600x600.jpg","author_info":{"display_name":"henryphillips","author_link":"https:\/\/www.healthnews.ie\/author\/henryphillips\/"},"vicky_index_order":"","_links":{"self":[{"href":"https:\/\/www.healthnews.ie\/wp-json\/wp\/v2\/posts\/10738","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.healthnews.ie\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.healthnews.ie\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.healthnews.ie\/wp-json\/wp\/v2\/users\/91"}],"replies":[{"embeddable":true,"href":"https:\/\/www.healthnews.ie\/wp-json\/wp\/v2\/comments?post=10738"}],"version-history":[{"count":6,"href":"https:\/\/www.healthnews.ie\/wp-json\/wp\/v2\/posts\/10738\/revisions"}],"predecessor-version":[{"id":10799,"href":"https:\/\/www.healthnews.ie\/wp-json\/wp\/v2\/posts\/10738\/revisions\/10799"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.healthnews.ie\/wp-json\/wp\/v2\/media\/10757"}],"wp:attachment":[{"href":"https:\/\/www.healthnews.ie\/wp-json\/wp\/v2\/media?parent=10738"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.healthnews.ie\/wp-json\/wp\/v2\/categories?post=10738"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.healthnews.ie\/wp-json\/wp\/v2\/tags?post=10738"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}