If you’ve ever watched an episode of CSI you’ve seen gruesome stuff. You would have seen the re-enactments of a murder, how a knife or a bullett entered the victim’s body, or the doctor performing biopsies. You would have seen hearts or brains being handled, throats slashed and worms devouring a cadaver. We’ve even seen a body being swallowed by a python-and then regurgitated. It’s all good and fine when it’s for entertainment purposes, but when it comes to reality, some people draw a line. Why?? Why is it ok to show gruesome things on National TV while the wound of a child suffering from EB is considered offensive and reported as inappropriate?

EB Awareness week was just upon us and silly me, thought that to really know what EB ~Epidermolysis Bullosa~ patients live through was to show what is going on under the bandages. A sea of wounds. The reaction was not what I expected. While all the comments on the photos that I posted on Facebook were compassionate and caring, apparently at least 2 people (friend of friends no doubt) felt the photos were simply inappropriate and felt they should report them. Facebook looked at the photo and decided that, yes, they should remove them, giving me a stern warning after the first one they removed, a photo of a wound on his knee, that 3 strikes and I was out. What? I quickly looked at the settings of my album and changed it from ‘friends of friends’ to ‘friends only’. I thought the problem was fixed. I was wrong. A week later a photo depicting Nicky’s whole body full of wounds was removed and FB decided to BLOCK ME from posting anything for 24 hours, further warning me that if they had to delete more wound photos they would delete my facebook account. So, I was forced to delete all the wound photos. How dare I try to raise awareness for a brutal disorder? You can see the photo removed and my post on my ebinfoworld.com website HERE. Yes, he was naked in this photo, but the angle was such as you can’t really see anything, all you can see is wounds. Besides, I’ve seen photos of ladies in bikinis or less on FB and nobody seems to mind those!! Give me a break.

It seems as if we’re fighting a double standard. It’s okay to show the wounds or gruesome stuff on TV or movies as long as everyone knows they are ‘fake’, right? But bring a bit of reality to the table and, God forbid.

I wish there was something I could do, but there isn’t. A 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.
From now on clinical (wound) photos will only be available on my ebinfoworld.com website, which is a site I PAY FOR, so I have rights.

Fighting the Double Standard and raising EB Awareness Daily.

Yours,

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