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STERLING: SIMPLEX

I'm Sterling de Koe from Rehoboth, Namibia. I was born with an extremely rare skin disease called Epidermolysis Bullosa. I have EB Simplex, which was the worst for me when I was a baby and toddler. I was too young to remember a lot of the pain and only know what it was like through what my parents told me.

However, as I got older, my hands fused together. I had a hand surgery in 2018 to fix this, but my hands went back to how they were eventually. People always ask me, "did you burn?" or "what happened?" I was always scared of those questions, but people are just curious. Recently, I've learned to move past my shyness and become more confident, because I can't hide behind closed doors forever. I must show everyone out there that having a disability shouldn't determine what you're capable of; it shouldn't limit you from being you and living your life. I've always wondered why I'm the one that has to look different among my friends and family. But, I've learned that being different is what makes you unique.

Though I don't know how long I'll be on this earth, I'm grateful for the gift of life, everyone I share it with, and to be able to hopefully make a difference in someone else's by sharing my story.​
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  • Epidermolysis Bullosa
    • What is EB?
    • Life with EB
    • Resources
  • Research
    • Our Impact
    • Scientific Advisory Board
    • Clinical Trials >
      • Filsuvez
      • Vyjuvek
      • ZEVASKYN
    • Town Halls
    • Apply for a Grant
  • Get Involved
    • Donate
    • Sponsor
    • EB Active
    • Events
    • The Effect
    • Shop
    • Give Cryptocurrency
    • Give Stocks
    • Give through Donor Advised Funds (DAF)
    • Accelerator Fund
  • Media
    • Matter of Time Film
    • Press
    • Videos
  • About Us
    • Our Mission
    • Financials
    • Venture Philanthropy
    • Supporter Spotlights
    • Leadership >
      • Board of Directors
      • Staff
  • Donate