Shardai: JUNCTIONAL
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Epidermolysis Bullosa, Latin for top layer of skin that blisters. Two words that I learned to say at a young age and that adults struggle to say in present times. When one thinks of blisters, they don’t think of how heavily it impacts your life. Especially when your body is riddled with them. Even I struggle as a 30-year-old woman at how my life has been completely altered by blisters. Blisters that turn into raw sores that resemble a third degree burn but feels like a second-degree burn. In the time that has elapsed since my birth and now, EB is more know. “These kids are in constant pain”, “we must find a cure”, “please donate to help us raise money to find a cure” these sentences I’ve heard throughout my life ring in my head, sounding the alarms as I internally scream. To minimize what we endure to just physical pain negates the totality of our tribulations.
I have been at war with myself for half of my life. One strives and yearns for a fulfilling life of longevity. While the other is tired and wants to perish. I can’t tell you how many times I’ve broke down as I tear a bandage adhered to my flesh leaving nothing but a deeper wound. It wasn’t just the pain…it was the thought of “I can’t do this for another 30 years”. I can’t continue to lose myself to an unhinged mutation. A mutation that throws one’s body completely out of orbit. Epidermolysis Bullosa…the top layer of skin that blisters. It sounds so simplistic while it is everything but. It’s a domino effect to our demise. The skin is your largest organ and ours have failed us since birth. Leading to an array of endless medical complexities that are all entwined. Countless wounds that absorb all of our nutrients leaving our bodies deprived. Not having enough nutrition to help heal said wounds. A continuous state of bleeding leaving our bodies with low iron levels that in turn leaves us in a constant state of exhaustion. Scar tissue from deep wounds that contracts our bodies. Scar tissue that rapid growing cancerous cells thrive in. Sores in our mouth and esophagus inhibiting our ability to eat. Thus, also adding to our malnutrition. The panic attacks prior to a bath, something that should be soothing turns into something you could use as a form of torture. The depression from losing physical abilities as we age and the mutation’s side effects progress. Because that’s really what EB is. It’s a mutation with a slew of symptoms that are untreatable just simply maintained. Ultimately, we are left with two choices; fold or fight. Surrender to the unhinged mutation or fight for a life of normalcy. A life where we go to school, have careers, travel, learn to drive, fall in love, have kids all whilst fighting our body and mind as we persevere through life. A life many of us strive for but not everyone achieves. Yes, we need a cure for EB not solely because of the pain but because of the mental toll we also endure. -Shardai 
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