Here’s the photos I promised yesterday when I updated Nicky’s CaringBridge Blog.
Once again, I don’t post these lightly. I cringe a little. But there is truly no other way to show people what EB is. To understand EB. I want people to understand why Nicky is in so much pain. Photos is the only way to show the cruelty of of his condition… Recessive Dystrophic Epidermolysis Bullosa.
What you see here is his left foot. His ankle (not shown) was one of the areas that was hurt as a baby and it’s basically always raw. The top of the foot here is very prone to being scratched and is almost always an open wound. The ‘white’ residue you see is what remains from our ‘concoction’ we use on his wounds to speed up optimum healing, made of a mixture of Desitin (or any 40% zinc diaper rash cream), DermaGran, Argan Oil, Keragel and Medihoney. Making sure wounds heal well and keep his body protected is our #1 priority. We don’t really ‘dry’ up wounds. We tried and not only it was extremely painful for Nicky, the scab that develops usually harbors an infection underneath. We would push it and green slime oozes out. Not only that, it heals with a nasty scar, of skin that is too fragile to even explain. Our concoction allows for proper, faster healing. Hey, it works for us. We do what we must and what we learned from trial and error over the past 18 years.
His leg is doing quite well lately, there was a time where the whole leg was 100% raw, but keeping it padded means he cannot scratch his fragile skin open quite so easily. His knee is also doing much better lately, which I attribute to our ‘concoction’. His thighs are a hard place to wrap and area always blistering. I am always wrapping higher as the bandages invariably move down. Ugh.
The top of the foot looks almost always like this. As per Nicky, it is extremely painful. Putting any pressure on it to take a step is hell. The middle of the foot is usually ok, but his heel looks like this as well, 90% of the time. It’s a constant battle.
Thank you for allowing me to post these, as I said, it’s not an easy thing for me to do, but I feel the need to educate everyone about EB.
Love and Light,