Rare Disease Awareness - Post 3

Fingernails and toenails goodbye? OH MY!

Baby hands and baby feet ....they are the cutest little things, aren’t they? The sheer miniature size is adorable, especially those mini fingernails and toenails! Oh, how I looked forward to seeing my baby’s itty bitty nails.

Yesterday, I talked about how the term Epidermolysis Bullosa basically translates into skin blisters. Depending on the type of EB (There are 4 main subtypes with further categorizations and severity ranges within each) the skin is unfortunately not the only thing affected. Because our body utilizes connective tissue throughout many systems - internal organs and mucous membranes are also affected. Furthermore, our fingernails and toenails also require collagen to anchor to our nail beds. Therefore, nail dysplasia (irregular nail growth or loss) commonly occurs in people with recessive dystrophic EB, like our Graham man.

Graham was born with some fingernails and toenails but there were clear and visible abnormalities. Some of his fingernails were black, and some of his toenails looked like they were only half-grown in. Eventually, his toenails fell off and his fingernails thickened and fell off as well. He has one adorably perfect tiny nail left on his right middle finger and I don’t know why but I have an attachment to this nail. Maybe because it’s the last one and it lets me know what his hands would look like with nails? I don’t know. Sadly, it has recently started to thicken and show some signs of malformation and I think its time is limited. I’m already finding myself mourning this nail. A fingernail...imagine that. Well, perhaps it’s not particularly the nail I’m mourning over but rather, it's the fact that EB takes yet another thing from our baby.

Despite what this diagnosis might take away, it's not going to take away the JOY that Graham brings us or the unconditional LOVE that we show him. You might have taken his fingernails and toenails, EB - but you’ll never take away his strong, brave, and resilient spirit and we will make sure of that. You’ll also never take away our support for our son, the advocacy that we will continue to spread (for not only EB awareness but also the importance of celebrating our differences), our faith, nor the hope that we strongly carry in our hearts.

“It is only in our darkest hours that we may discover the true strength of that brilliant light within ourselves that can never, ever, be dimmed.“

#thisisEB