As I posted yesterday, wound pics generate a barrage of negative comments on Facebook, they usually end up being reported and deleted, which is why I don’t post them there anymore. It’s just not worth getting banned over them when I can just post them here.

This is EB-more specifically, Recessive Dystrophic Epidermolysis Bullosa-Severe Generalized subtype. This is what my son has. I know very well how upsetting these photos are. They upset me greatly. However, what other way is there to fully explain the condition? I haven’t found another one that is this eloquent. There are no real need for words.

I have some photos of his arms that are even more disturbing to me than these, but I want to take some new photos of those in a couple of months then I will post them.

The truth is that I don’t like posting photos too often. EB is horrible, but it’s not what our life is all about.

Read about Nicky’s Life: https://www.facebook.com/butterflychildbook

Learn more about EB at my main site: http://blog.ebinfoworld.com/?page_id=208

Donate to find a cure: EBMRF http://www.ebkids.org and DEBRA http://www.debra.org

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I took the above photo a couple of weeks ago. This is inner thigh which is notoriously a very hard spot for us to bandage and take care of. Just “sitting” can be very painful to him.

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The photos below were taken a couple of months ago. After unwrapping the legs it’s not unusual for us to have these kinds of surprises. Either raw areas with skin dangling everywhere from a huge blister that popped on its own under the bandages (second one down), or this example of a blood blister on his foot. Nicky has quite small feet (and hands too as far as that goes) from the relentless damage inflicted upon his extremities over the years. He can’t put any pressure under his feet without serious consequences. 
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I want to thank everyone for the kind words of support and the continuous uplifting messages I get from all over the world. Your care and concern has lifted me in ways I cannot fully express.

All I can say is THANK YOU!

Love & Light,

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