Apparently the daily life of my son is offensive to Facebook and whoever ‘reported’ this photo to Facebook as a violation of the statement of rights and responsabilities. Huh?
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?
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.
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.
There is no cure.
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) or DEBRA (http://debra.org)
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
Yes, my second warning, my second wound pic they deleted, which forced me to remove all the wound pics from my profile.
Maybe Facebook should stop policing EB families and start donating to find a cure. Who agrees with me?
UPDATE 11/9/2011
I 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.
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 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}}
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.
I also suffer with RDEB it is the most painful thing ever. Photos like this need to be posted so people under stand the pain and the reality of this disease we are not contagious. I have also been asked if ihave been in a fire and that I have bought my skin of the Internet and stuck it on, this is why photos like this need to be posted because it is such a rare skin condition people don’t under stand what it’s like to live with eb the endless amount of hospital appointment, surgery that doesnt help for long, dressing changes which can last for hours, baths which can be awful, endless amount of medication. People with eb go through pain everyday but by our faces you wouldnt relies this without seeing photos like this, people see the smile on your face and think it’s can’t be that bad but we have lived with this condition since birth and learnt how to hide the pain behind a smile. We NEED photos like this to make eb known and what place todo this better than facebook think how many people have Facebook and if we can tell one person about eb and they tell someone else and so on alot more people would know about eb and the pain and suffering we ALL go through. I’m 15 years old and I’ve learnt to put a smile on my face and try and blank the pain out but no matter how hard you try it’s still there and it will always be, people moan about a blister on their foot or a cut we have big opens wounds all over are body it doesnt just effect the outside it effects the inside to our heart our throat. We need to do everything we can to get EB known.
Those pictures are not pretty. However, nothing about EB is pretty. compared to other stuff on the net, this is tame. This has a purpose: to educate people. To inspire people to donate so that someday SOON, treatment, real treatment, will be an option. Right now, all that EBers have are bandages, and ointments to salve the damage once it happens. And it happens daily.
I agree..some times a little “Honest Shock” is what people need to understand something. I was NOT aware of this Scott until I saw this. Thank you for bringing it to light and SHAME on FB!
I saw a link to your blog on Twitter and through that, actually learned what EB is. I have a chronic illness, too: lupus. My illness can cause serious skin problems ranging from rashes to even necrosis in severe cases. Your pic displays EB; many people probably think that, unless they or their loved one has EB, this won’t effect them. But they’re wrong. It effects anyone with a chronic illness, an illness that can be seen in pictures. The fact that this has happened to one person is horrible; and I’m sorry it happened to you and your family. But under the same logic, Facebook can delete the picture of every person with a visible chronic illness. That is discrimination based on appearance, based on who one is and what one looks like. It’s prejudice.
I don’t know if you’ve already done so, but please try to get this out to the media. Contact your local news station(s). I’m sure they’d love to jump on this story — and it might get even more attention if they share it with their national affiliates. You and your son deserve justice, and getting your story out to the world could save many others the pain you’re experiencing.
I’ve shared your link with my circles on various sites. I really hope things improve for you.