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.
