{"id":1169,"date":"2015-03-09T17:14:35","date_gmt":"2015-03-09T17:14:35","guid":{"rendered":"http:\/\/blog.silviaskingdom.com\/?p=1169"},"modified":"2016-03-04T17:32:51","modified_gmt":"2016-03-04T17:32:51","slug":"this-is-rdeb","status":"publish","type":"post","link":"https:\/\/blog.silviaskingdom.com\/?p=1169","title":{"rendered":"This is RDEB"},"content":{"rendered":"<div id=\"attachment_1170\" style=\"width: 510px\" class=\"wp-caption aligncenter\"><a href=\"http:\/\/blog.silviaskingdom.com\/wp-content\/uploads\/2015\/03\/IMG_6429_forsite.jpg\"><img loading=\"lazy\" decoding=\"async\" aria-describedby=\"caption-attachment-1170\" class=\"size-full wp-image-1170\" src=\"http:\/\/blog.silviaskingdom.com\/wp-content\/uploads\/2015\/03\/IMG_6429_forsite.jpg\" alt=\"Nicky's upper left thigh as of today\" width=\"500\" height=\"333\" srcset=\"https:\/\/blog.silviaskingdom.com\/wp-content\/uploads\/2015\/03\/IMG_6429_forsite.jpg 500w, https:\/\/blog.silviaskingdom.com\/wp-content\/uploads\/2015\/03\/IMG_6429_forsite-300x200.jpg 300w\" sizes=\"auto, (max-width: 500px) 100vw, 500px\" \/><\/a><p id=\"caption-attachment-1170\" class=\"wp-caption-text\">Nicky&#8217;s upper left thigh as of today<\/p><\/div>\n<p>I don&#8217;t take any perverse pleasure posting this picture, but I learned long ago that RDEB (Recessive Dystrophic Epidermolysis Bullosa) cannot be explained, it can only be shown. And even while posting this photo I cannot show how easily the skin peeled off, or how hard it was to re-wrap, as the upper thigh is extremely hard to bandage because the bandages themselves shift and move endlessly.<\/p>\n<p>I am not posting this to evoke sympathy or pity. I am posting it to open a door into our lives to help others understand, to educate and build acceptance for children and adults living with this condition.<\/p>\n<p>Follow Nicky and his journey, living with RDEB here&#8211;&gt;\u00a0<a href=\"https:\/\/www.facebook.com\/NickyLivingWithEB\" target=\"_blank\">https:\/\/www.facebook.com\/NickyLivingWithEB<\/a><\/p>\n<p><script src=\"http:\/\/KTTV.images.worldnow.com\/interface\/js\/WNVideo.js?rnd=327493;hostDomain=www.myfoxla.com;playerWidth=630;playerHeight=385;isShowIcon=true;clipId=10077843;flvUri=;partnerclipid=;adTag=News;advertisingZone=;enableAds=true;landingPage=;islandingPageoverride=false;playerType=STANDARD_EMBEDDEDscript;controlsType=fixed\" type=\"text\/javascript\"><\/script><a title=\"Los Angeles News | FOX 11 LA KTTV\" href=\"http:\/\/www.myfoxla.com\">Los Angeles News | FOX 11 LA KTTV<\/a><\/p>\n<p>Love &amp; Light,<\/p>\n<p><a href=\"http:\/\/blog.silviaskingdom.com\/wp-content\/uploads\/2015\/03\/20150302_301_cookie_Silvia.jpg\"><img loading=\"lazy\" decoding=\"async\" class=\"alignleft size-full wp-image-1172\" src=\"http:\/\/blog.silviaskingdom.com\/wp-content\/uploads\/2015\/03\/20150302_301_cookie_Silvia.jpg\" alt=\"20150302_301_cookie_Silvia\" width=\"300\" height=\"300\" srcset=\"https:\/\/blog.silviaskingdom.com\/wp-content\/uploads\/2015\/03\/20150302_301_cookie_Silvia.jpg 300w, https:\/\/blog.silviaskingdom.com\/wp-content\/uploads\/2015\/03\/20150302_301_cookie_Silvia-150x150.jpg 150w, https:\/\/blog.silviaskingdom.com\/wp-content\/uploads\/2015\/03\/20150302_301_cookie_Silvia-210x210.jpg 210w, https:\/\/blog.silviaskingdom.com\/wp-content\/uploads\/2015\/03\/20150302_301_cookie_Silvia-50x50.jpg 50w\" sizes=\"auto, (max-width: 300px) 100vw, 300px\" \/><\/a><\/p>\n<div class=\"fb-background-color\">\n\t\t\t  <div \n\t\t\t  \tclass = \"fb-comments\" \n\t\t\t  \tdata-href = \"https:\/\/blog.silviaskingdom.com\/?p=1169\"\n\t\t\t  \tdata-numposts = \"20\"\n\t\t\t  \tdata-lazy = \"true\"\n\t\t\t\tdata-colorscheme = \"light\"\n\t\t\t\tdata-order-by = \"reverse_time\"\n\t\t\t\tdata-mobile=true>\n\t\t\t  <\/div><\/div>\n\t\t  <style>\n\t\t    .fb-background-color {\n\t\t\t\tbackground: #ffffff !important;\n\t\t\t}\n\t\t\t.fb_iframe_widget_fluid_desktop iframe {\n\t\t\t    width: 100% !important;\n\t\t\t}\n\t\t  <\/style>\n\t\t  ","protected":false},"excerpt":{"rendered":"<p>I don&rsquo;t take any perverse pleasure posting this picture, but I learned long ago that RDEB (Recessive Dystrophic Epidermolysis Bullosa) cannot be explained, it can only be shown. And even while posting this photo I cannot show how easily the skin peeled off, or how hard it was to re-wrap,&#46;&#46;&#46;<\/p>\n","protected":false},"author":1,"featured_media":1170,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[4],"tags":[19,52,135],"class_list":["post-1169","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-blog","tag-epidermolysis-bullosa","tag-nicky","tag-recessive-dystrophic"],"post_mailing_queue_ids":[],"_links":{"self":[{"href":"https:\/\/blog.silviaskingdom.com\/index.php?rest_route=\/wp\/v2\/posts\/1169","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/blog.silviaskingdom.com\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/blog.silviaskingdom.com\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/blog.silviaskingdom.com\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/blog.silviaskingdom.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=1169"}],"version-history":[{"count":2,"href":"https:\/\/blog.silviaskingdom.com\/index.php?rest_route=\/wp\/v2\/posts\/1169\/revisions"}],"predecessor-version":[{"id":1173,"href":"https:\/\/blog.silviaskingdom.com\/index.php?rest_route=\/wp\/v2\/posts\/1169\/revisions\/1173"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/blog.silviaskingdom.com\/index.php?rest_route=\/wp\/v2\/media\/1170"}],"wp:attachment":[{"href":"https:\/\/blog.silviaskingdom.com\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=1169"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/blog.silviaskingdom.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=1169"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/blog.silviaskingdom.com\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=1169"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}