Deanna: Dystrophic
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I have always believed actions speak louder than words, wherein the simple stroke of a brush emanates volumes about the person who yields it. Art has always been my failsafe; it has been my escape for as long as I can remember. It is my strength and inspiration. First and foremost, I am an artist, painter and stylist; and yes, I too have EB.
My name is Deanna Molinaro. I’m 27 years old, from Hamilton Ontario Canada. At birth, I was diagnosed with Recessive Dystrophic Epidermolysis Bullosa. As a result of my EB, my body is covered almost 80% in open wounds. I am fully wheelchair dependent and physically unable to complete the most menial of tasks without some form of assistance. It is not only my determination in pursuit of success in arts, but also in my unyielding familial support and wonderful circle of friends that I have been able to push through the numerous challenges life has thrown my way. In Canada, when I was born in 1992, there was very little knowledge, let alone professional guidance, on how to treat my EB. My parents took it upon themselves to seek support elsewhere by way of Rockefeller University Hospital and just a few short years later in 1996, they became the founding members of Debra Canada. It was from that moment on that I became Canada’s first voice of many EB patients. Over the years, EB has thrown many curveballs my way: countless routine visits to the doctors, numerous surgical procedures and the emotional bouts of depression. Nothing was comparable to the punch I was given late spring before my graduating year at Sheridan College. In the manner of 2 months, I was diagnosed with stage 4 Squamous Cell Carcinoma and lost my dominant right forearm to necessary amputation. At that point in my life, I was determined to believe that if I could get through high school, I could do anything. That summer spent in recovery, I was able to train myself to become a full-time lefty and was back in school by September. I have since graduated with an advanced diploma in Visual and Creative Arts, started my own freelance business as an independent artist, and survived another bout of skin cancer. I am currently cancer-free, working on getting a solo gallery exhibition of my own and throwing myself back into the ring as a global patient activist . It is true; often times having EB is unbearable, but it has made me the strong resilient person I am today. I wouldn’t wish it on anyone, but I am better for it. - Deanna
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