{"id":340,"date":"2011-11-08T04:39:53","date_gmt":"2011-11-07T19:39:53","guid":{"rendered":"http:\/\/blog.ebinfoworld.com\/?p=340"},"modified":"2014-05-10T03:32:50","modified_gmt":"2014-05-09T18:32:50","slug":"eb-wounds-offensive-to-facebook","status":"publish","type":"post","link":"https:\/\/blog.ebinfoworld.com\/?p=340","title":{"rendered":"EB wounds offensive to Facebook?"},"content":{"rendered":"

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Apparently the daily life of my son is offensive to Facebook and whoever ‘reported’ this photo to Facebook as a\u00a0violation of the statement of rights and responsabilities.\u00a0Huh?<\/p>\n

No, this photo isn’t pretty. That’s the point of posting it, isn’t it? To SHOW what EB is really like. To show the suffering EB patients endure. We’ve seen much, much worse photos on facebook, from gory, since it was just Halloween, to photos of drunk, disgusting partying sexy people, yet a photo of a child suffering gets removed?<\/p>\n

It all started during EB Awareness Week, which is the last week of October; people are used to seeing EB patients wrapped in bandages, so they have no idea what goes on underneath the bandages. So, I posted wound pics I’ve taken over the years. Many of these pics had been on my profile for years without as much as a peep. The first photo they removed last week was over 2 years old. This one I posted several months ago.<\/p>\n

I have had comments on this website from people assuming the wounds EBers get are like rashes, or bruises. Nothing could be further from the truth. Nicky has RDEB-Recessive Dystrophic Epidermolysis Bullosa, which means that when he gets a blister, the blister is deep. So deep in fact that it tears away the entire epidermys and even part of the dermis, leaving 2nd degree burn-like wounds. It’s horrible, it’s painful and it’s lethal. Children born with the more severe forms of EB live in cosntant pain, full of procedures and bandages. Some with the Junctional Herlitz form rarely survive to see their first birthday. Those with Recessive Dystrophic are always battling infections and a great amount of them die from skin cancer.<\/p>\n

There is no cure.<\/p>\n

There are a handful of organizations on the verge of finding a treatment, if you do NOTHING else today, share the link of this page to someone who you think might help. The organizations to donate to for a cure are either the EBMRF (http:\/\/ebkids.org<\/a>) or DEBRA (http:\/\/debra.org<\/a>)<\/p>\n

The posting on Facebook that explains more of what the ramifications to me were for posting this picture and to comment is here: http:\/\/fb.me\/13PkgqMHE<\/a><\/p>\n

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Yes, my second warning, my second wound pic they deleted, which forced me to remove all the wound pics from my profile.<\/p>\n

Maybe Facebook should stop policing EB families and start donating to find a cure. Who agrees with me?<\/p>\n

UPDATE 11\/9\/2011
\nI wanted to take a moment and thank everyone for the kind words. One thing I must clarify, however, is that while some feel Facebook is not at all to be “responsible” since it’s all ‘automatic’, actually that is not true.
\nA lawyer friend looked into this ‘Rights & Responsabilities’ issue and apparently the way this works, FB only looks at the photo once someone complains. If they deem the photo worthy of removal they can remove it and their decision is FINAL. There is no recourse. Basically if you sign up with an account with FB you agree to their rules, and if you don’t like the rules, too bad.
\nFrom now on clinical (wound) photos will only be available on my THIS (ebinfoworld.com) website, which is a site I PAY FOR, so I have rights. Because of my twitter campaign about this yesterday and this morning, many people are now aware of EB, so at least something GOOD comes out of Facebook’s abscence of a heart. {{HUGS}}<\/p>\n

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Silvia Corradin<\/a><\/div>\n

Mom to 3 boys, 1 in heaven, 2 on earth. My first son Alex (whose demise is most likely EB related) was stillborn at full term. After a miscarriage, I had my second son Nicky, who has the Recessive Dystrophic form of Epidermolysis Bullosa. My youngest son, Connor, is 100% healthy, and I never, ever take it for granted. I am an author, photographer, graphic artist, webmaster, blogger and more.<\/p>\n

\"Facebook\"<\/a> \"Twitter\"<\/a> \"Google+\"<\/a> \"Flickr\"<\/a> \"YouTube\"<\/a> <\/p>\n<\/p><\/div>\n

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<\/p>\n","protected":false},"excerpt":{"rendered":"

Apparently the daily life of my son is offensive to Facebook and whoever ‘reported’ this photo to Facebook as a\u00a0violation of the statement of rights and responsabilities.\u00a0Huh? No, this photo isn’t pretty. That’s the point of posting it, isn’t it? To SHOW what EB is really like. To show the suffering EB patients endure. We’ve…<\/p>\n

Read More<\/a><\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[57],"tags":[60,58,24,59],"class_list":["post-340","post","type-post","status-publish","format-standard","hentry","category-blog","tag-cure","tag-facebook","tag-recessive-dystrophic","tag-wounds"],"_links":{"self":[{"href":"https:\/\/blog.ebinfoworld.com\/index.php?rest_route=\/wp\/v2\/posts\/340","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/blog.ebinfoworld.com\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/blog.ebinfoworld.com\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/blog.ebinfoworld.com\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/blog.ebinfoworld.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=340"}],"version-history":[{"count":10,"href":"https:\/\/blog.ebinfoworld.com\/index.php?rest_route=\/wp\/v2\/posts\/340\/revisions"}],"predecessor-version":[{"id":1672,"href":"https:\/\/blog.ebinfoworld.com\/index.php?rest_route=\/wp\/v2\/posts\/340\/revisions\/1672"}],"wp:attachment":[{"href":"https:\/\/blog.ebinfoworld.com\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=340"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/blog.ebinfoworld.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=340"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/blog.ebinfoworld.com\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=340"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}