Why I refer to EB as a rare skin condition rather than a disease

I started elementary school in the mid-1990s. The internet was still in its early stages, and there wasn’t nearly as much research and knowledge about epidermolysis bullosa (EB) as there is today.

Before I began school, my mom taught me how to talk about my condition because she knew other students would have curious questions. You can imagine how confused a 6-year-old would be after asking me about my bandages and hearing me respond, “I have epidermolysis bullosa, or EB for short.”

At that age, the only way I understood how to describe EB to others was that it was a skin disease, and I could get hurt easily. This was how my mom explained it to other parents, who would usually ask if EB was contagious. Other students usually asked a similar question.

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Around the age of 10, I learned more about EB and how it directly affected my life. This helped me understand that EB was something I was born with, and that it wasn’t contagious. However, I would still get the same follow-up question when I said that I was born with a skin disease.

This led me to experiment with describing EB as a skin condition that I was born with, in the hopes that this slight change might yield different results. I noticed that replacing the term “disease” with “condition” resulted in fewer people asking whether it was contagious.

Now that I am an adult, there is a lot of information online about EB. When I describe my condition to others, I no longer get that follow-up question.

I understand that using the term “disease” can have a greater impact in terms of spreading awareness and understanding about EB. It better conveys the reality of what children and adults with EB go through. EB is now widely known as “the worst disease you’ve never heard of.”

Still, I prefer to refer to EB as a rare genetic skin condition that I was born with. It helps me describe it quickly and simply, without receiving negative follow-up questions or remarks.

Note: Epidermolysis Bullosa News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Epidermolysis Bullosa News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to epidermolysis bullosa.