Nicky’s Wound Pics Part 2

This is part 2 of a series of posts I will make with wound photos that Facebook does not allow me to post. Post #1 is here.
I took some photos of Nicky’s wounds to be shared at the Hydrotherapy yesterday, June 18, 2012.  I just updated Nicky’s journal about how he is currently doing, it can be viewed here –>
http://www.caringbridge.org/visit/nickyz/journal

I picked 8 photos of his limbs, the knees/wrists are infected with Pseudomonas which we are dealing with. Overall we are pleased, he’s doing good with the combination products I use on his wounds and the heavy usage of Webril to prevent him from hurting himself by scratching, and create a padding that helps him do things he would not otherwise not being able to do… you know, like walking.

Nicky's Left Elbow. This elbow has significantly improved since last year thanks to the Polymem, it was even biopsied at Stanford.

Left Wrist has also significantly improved with the Polymem.

Right Knee and top

Left Knee

Left Knee

Right Knee

Right Hand and wrist

Right wrist

... and he STILL smiles at me despite it all. <3 <3 <3

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.

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Nicky’s Wound Pics

I struggled a lot to make this, the first post on this site particularly for Nicky’s wounds. In the past I’ve been victimized by many to do so, even from EB patients and other parents, Facebook nearly deleted my account for posting photos (you can read about that HERE), *but* I always feel as if we’re “sanitizing” EB for mass consumption, particularly RDEB since its wounds are rather deep and nasty, and showing photos of Nicky all bandaged up I never felt served the purpose it needed to serve, SHOWING the reality of EB.

So, from time to time, I will start posting wound pics as I take them. More wound pics for the Recessive Dystrophic form can be seen HERE

I picked three photographs that I took just the other day. One shows the ankle, one the top of his foot and one a knee. It’s important for me to say a few things about these pictures:
1. Nicky is perfectly OK and has *always been* perfectly OK with me posting these. Go ahead, ask him!
2. His knee and ankle are his worse spots by far. His ankle was damaged at birth from those hospital bracelets and while it always healed up to the time he was 5 or 6, it’s been several years now that no matter what we do and what products we use, it may heal partly but it will blister up again.

NIcky's ankle

The top of his foot-hasn't healed in ages. We use Polymem on it now and it seems to help a lot!

Nicky's knee

I also wanted to say that even though Nicky’s wounds are not much worse per se than when he was smaller, there are more of them and take much longer to heal or they do not heal at all. They are also much more painful to him, whose every step is an agony, who cannot walk straight because his knees are too painful to straighten. Lately his ankle has made it so it’s even MORE painful to flatten his feet. The toll having EB has taken after 15 years it’s something I truly cannot describe.

Next time I will post photos of his arms/hands. Thank you for keeping your comments kind. 🙂

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.

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EB wounds offensive to Facebook?

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.

Facebook Twitter Google+ Flickr YouTube