Blog · July 19, 2019

This website about my child with Epidermolysis Bullosa reported as having abusive content?

Something happened when I tried to share my latest post from this website on Facebook on July 10th…

Hmmm… really? People on Facebook have reported this website as abusive?

When I further tried to copy and paste a link to my blog on Facebook I got this message:

I requested many reviews, complained, sent feedback, asked, wondered, you name it. I got no response at all. I also read through the Community Standards and there is absolutely NOTHING in there about having “wound pictures” on my blog (not on Facebook, mind you, on my BLOG) that are deemed spam or are truly that graphic. There is no nudity in these pics, just wounds on arms or legs.

This reminds me of the time a few years ago when I used to post my son’s wound photos On FB itself and I got put in Facebook jail for it.
That post is here:

So, I will repeat what I wrote on that post. No, the photo of the wounds I post (which are actually pretty rare nowadays) aren’t pretty. That’s the point of posting them, isn’t it? To SHOW what EB is really like. To show the suffering EB patients endure. To help people see what is under the bandages.

I had actually written another blog about this, available here:

This blog talks about double standards, which I compared to an episode of CSI.
“f 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 bullet 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?”

Fighting to help people understand EB seems like an ongoing battle. People don’t want to see it, so they will never understand it.

The struggle continues… and, BTW, since Instagram is owned by Facebook, this website is banned there too. Nice huh?

Love & Light,