{"id":27999,"date":"2022-02-28T12:19:11","date_gmt":"2022-02-28T11:19:11","guid":{"rendered":"https:\/\/www.schuchmann.de\/?p=27999"},"modified":"2022-03-14T12:21:38","modified_gmt":"2022-03-14T11:21:38","slug":"rare_disease_day_2022","status":"publish","type":"post","link":"https:\/\/schuchmann.de\/en\/rare_disease_day_2022\/","title":{"rendered":"300 million people worldwide need support"},"content":{"rendered":"<p>We shouldn\u2019t define Lucas with just his disability we should pay attention to who he is as a person. On Rare Disease Day, we want to give a voice to those affected and draw attention to their worries, needs and concerns. And also to hear what inspires them.<\/p>\n<p>Lucas is a young person like every other young person: &#8220;I like manga and anime and would love to go to the DoKomi in D\u00fcsseldorf (that&#8217;s an anime convention). I like doing crossword puzzles, and I like to read.&#8221; Maybe that&#8217;s why he&#8217;s so articulate, although he says of himself that he&#8217;s rather shy. &#8220;I&#8217;m particularly fond of the Dragon Taming Made Easy books which, by the way, are so much better than the films\u201c.<\/p>\n<h5><strong>The small but subtle difference.<\/strong><\/h5>\n\n<style type=\"text\/css\" data-created_by=\"avia_inline_auto\" id=\"style-css-av-jmnzi6-06021066f427604599695f29010b17e3\">\n.avia-image-container.av-jmnzi6-06021066f427604599695f29010b17e3 .av-image-caption-overlay-center{\ncolor:#ffffff;\n}\n<\/style>\n<div  class='avia-image-container av-jmnzi6-06021066f427604599695f29010b17e3 av-styling- avia-align-right  avia-builder-el-0  avia-builder-el-no-sibling '  itemprop=\"image\" itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/ImageObject\" ><div class=\"avia-image-container-inner\"><div class=\"avia-image-overlay-wrap\"><img decoding=\"async\" class='wp-image-28607 avia-img-lazy-loading-not-28607 avia_image' src=\"https:\/\/schuchmann.de\/wp-content\/uploads\/2022\/02\/Lucas_klein.jpg\" alt='' title='Lucas_klein'  height=\"425\" width=\"300\"  itemprop=\"thumbnailUrl\"  \/><\/div><\/div><\/div>\n<p>There are things that set him apart from others his age. For example, because of his AMC Lucas wears a helmet as occasionally he falls. His e-wheelchair also reveals at first glance that he has one or two special requirements. &#8220;I am constantly being underestimated. People just see my disability and assume I am incapable, I am actually very observant and on the ball.&#8221; This is probably the prejudice that many of the people with a rare disease struggle with.<\/p>\n<p>&#8220;Maybe that&#8217;s why I don&#8217;t like crowds. I used to get stared at a lot. Now not so much. Or maybe I&#8217;ve just got used to it?&#8221;<\/p>\n<h5><strong>Lucas is a real exceptional talent.<\/strong><\/h5>\n<p>Lucas doesn&#8217;t have any concrete career aspirations yet but if it were up to his friends, Lucas would be great working at a bank. Eloquent, that&#8217;s what he is and also very assertive, he also really enjoys sports. The 15-year-old is passionate about table tennis and football. Admittedly, on the console but when it comes to playing FIFA he&#8217;s a match for anyone else.<\/p>\n<h5><strong>Aids help in everyday life. Most of the time.<\/strong><\/h5>\n<p>In Luca&#8217;s case, it quickly becomes clear that aids sometimes fail to serve their purpose: &#8220;I don&#8217;t know why it&#8217;s called an active wheelchair &#8211; I can&#8217;t drive it on my own, I have to be pushed. It&#8217;s only used when it rains and I have to be driven to school. Actually, I only use my e-wheelchair with a mobile phone holder.&#8221; Of course, the mobile phone holder is obligatory for any media-savvy teenager. Which Lucas definitely is. &#8220;I also have a <em>madita.<\/em> from you. But I only use it for eating and cutting my hair.&#8221; Well, thats something at least &#8230; \ud83d\ude0a<\/p>\n<h5><strong>Let&#8217;s look at the people behind the diagnoses.<\/strong><\/h5>\n<p>Thank you for the insight into your life Lucas. And for reminding us once again that people are still people and not just numbers or a diagnosis. And thanks to your dedicated therapist Anne Peteranderl from the treatment centre in Aschau, who made the interview possible.<\/p>\n<p><strong>Show your rare, show you care!<\/strong><\/p>\n","protected":false},"excerpt":{"rendered":"<p>On Rare Disease Day, we dedicated ourselves to all people affected by a rare disease. That&#8217;s over 300 million worldwide!<\/p>\n","protected":false},"author":17,"featured_media":15710,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[524],"tags":[525,711,712,713,714,740],"class_list":["post-27999","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-news-en","tag-schuchmann-en","tag-medication","tag-therapy","tag-cures","tag-rare-disease-day-en","tag-support"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.1 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>300 million people worldwide need support - Schuchmann GmbH &amp; Co. KG<\/title>\n<meta name=\"description\" content=\"On Rare Disease Day, we dedicated ourselves to all people affected by a rare disease. 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