Life with EB Simplex

What is unpleasant to bear is seldom offset by the ease of its description. Dermal detachment is a case in point. The sensation of near-spontaneous dermal detachment makes the experience quite memorable, and as most will know, what is painful, unwelcome, or alarming is quite unforgettable and for that reason straightforward to describe.

There are essentially two sensations, one for each form of detachment.

...continue reading
0

Anyone who spends much time with me sees a lot of blood. I doubt anyone ever gets used to it, and I wouldn't blame them if they quit. My skin condition, EB simplex, causes my skin to rip and rupture under friction, with deeper tears bleeding. Google it at your peril, you will not like what you find. Even though I can verbally reassure most mature people that it is not as painful and dangerous as the bloodiness suggests, nobody can really grow insensitive to the sight. After all, that sensitivity has helped us survive the savagery of nature for countless millennia. We are hardwired to both pay attention to and fear the sight of blood.

...continue reading
1+