It's More Than Skin: Living with EB

By Deanna, Dystrophic Epidermolysis Bullosa, Canada, February 25, 2021

Deanna by: Gady Mayen

It’s More Than Skin, no matter how unique our outer appearance may be, it is our innermost self that shines brightest and defines our legacy. 

My name is Deanna, I am an emerging contemporary artist, from Hamilton Ontario, Canada. At birth, I was diagnosed with Recessive Dystrophic Epidermolysis Bullosa (RDEB). For those who don't know, Epidermolysis Bullosa (EB) is a rare blisteringly painful and incurable genetic skin condition. Infants born with RDEB do not produce collagen - 7, a protein which acts as the “glue” that holds layers of skin together. As a result, our skin lacks elasticity and is extremely fragile; the slightest trauma causes the skin to shear and blister, leaving behind wounds and strictures equivalent to those created by third-degree burns.

In 1992, at the time of my birth, there was very little knowledge, let alone professional guidance, on how to treat EB. My parents took it upon themselves to seek support elsewhere and a few years later they became the founding members of DEBRA’s Canadian chapter. In 1999 DEBRA Canada was born—and from that moment on—I became Canada’s first voice for many EB patients.

Today, DEBRA Canada’s mission is to stand together for Canadians affected by EB in raising awareness and supporting the community through programs, services, education, advocacy, and research. DEBRA Canada works hard to support patients and the medical community dedicated to caring for these individuals. Families can now connect with Canadian EB specialists and have support to navigate the challenges of living life with this incurable condition.

Living as an adult with EB, my body is covered almost 70% 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 my unyielding familial support and wonderful friends that help me to push through the numerous challenges life has thrown my way. My journey includes countless routine medical appointments and surgical procedures, the most gut-wrenching being my late stage diagnosis of Squamous Carcinoma (a harsh reality faced by many living with RDEB), which resulted in an amputation of my dominant right forearm.

Evidently, it has been a rough road, yet I have never let my EB define me. I have since graduated with an advanced diploma in Visual and Creative Arts, started my own freelance business D’innovation Art as an independent artist, and I am working toward attaining a solo gallery exhibition. I am delighted to report that I am presently cancer-free, and I sit a Director on the DEBRA Canada board, as determined patient advocate and podcast host of It’s More Than Skin(available on Spotify or Apple Podcasts). It is true, oftentimes 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.

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