Blog · July 5, 2015

When I Can’t Explain, I Show.

It has become apparent over the years that 9 times out of 10, when Nicky tells me his foot is really “bad”, I need to brace myself. This is what I braced myself for a couple of weeks ago…

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After I took off the bandages, big areas of skin just started peeling off the top of the foot. I wanted to show this picture because I wanted to illustrate how fragile Nicky’s skin is… it does not even blister anymore in some areas, it just peels off like this. If he has a crust anywhere it will actually “cause” more blisters and create bloody areas too. The crusts dig in the good skin and create more damage. As he puts just a little pressure to take a step, it “moves” the skin and create even more damage.

Nicky took matters in his own hands and started cutting off the peeling skin…

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While not his whole body is like this, many areas are. Different part of his body behave in very different ways. It’s the baffling experience with EB that is hard to explain in words and must be shown to get the point across. EB is our monster we fight every day.

I will keep taking pictures and I will keep showing as long as Nicky lets me!

Love and Light,