EB and Significant Others

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.

My clothing, sheets, towels, and almost everything that comes into contact with my skin gets bloody. That must be pretty demoralising. And it never gets better. There are no treatments and there is no improvement. Colder weather helps, but it's not a cure. Any part of my body that encounters friction is susceptible to skin loss, with feet and hands particularly affected, for obvious reasons.

I can only thank goodness that my kid did not inherit this curse, and I truly feel for those with kids who have the two severer forms of this condition (in which the skin breaks are far, far deeper), and their parents. They will spend most of their lives bandaged up like mummies, may never enter puberty, lose toes and fingers, and probably die very young.

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