Our one-of-a-kind EB Connect community is made up of individuals and families from around the world who are navigating life with EB. The EB Connect Spotlight series highlights these individuals and their unique stories. Today’s spotlight shines on Zora Rowe Redd, an athlete and college freshman from Missouri who lives with EB Simplex. 

1. When were you diagnosed with EB? Please tell us about you and your family’s journey learning about the diagnosis. 

I was diagnosed when I was just 6 weeks old. My family noticed spots on my heels first, then my legs when I was about 2 weeks old. That’s when we went back to the doctors and they sent us to a dermatologist. The dermatologist sent us to St. Louis to the Children’s Hospital and they finally diagnosed me with Epidermolysis Bullosa Simplex.  

2. What are some challenges, if any, that you have faced as an individual with EB? How did you learn to overcome them? 

Growing up with EB can come with many challenges. Middle school was definitely the most challenging few years of my life. Middle school was when my classmates really started noticing that I was different. I was quickly judged and bullied for my appearance. I didn’t have the confidence to stand up for myself for many years in school. I remember one day, my grandma picked me up from school and I was crying. She told me “just because you are different doesn’t mean you can’t do what they can. Ever since then, I have been pushing myself to be the best I can be. When I went into high school, I was able to stand up for myself and others and slowly the bullying went away. Overcoming challenges might seem impossible but I promise, if you put your mind to anything you can do it, no matter what.  

3. What brings you hope/joy when you’re having an especially tough day? 

My family and friends bring me hope when I’m having a bad day. Having my family being my number one supporter in everything I do has helped me tremendously. I personally do not know where I would be without them pushing me to keep going and pursuing what I love. 

4. Have you ever met another person with EB? If so, what was that experience like? 

I have never met anyone else with EB. Hopefully, in the near future I would love to connect with teens my age to hear their story.  

5. Tell us about your hobbies! 

I started sports my freshman year of high school and just ran track and was a competitive powerlifter. I got started in track because I used to cheer with one of the coach's daughters. The coaches were always super supportive and always trying to find ways to make running easier on me.  

I also was a very active lifter in the weight room. The weight room started as a place where I could escape from reality. Eventually, I became very good and started to beat my PRs and the weights coach mentioned a weightlifting competition. I decided to compete and ever since then, weight lifting has been a passion.  

With EB, it is super hard to lift weights and now get blisters. I would use several rolls of tape and wrap to protect my hands and lots of chalk. My top lift throughout high school was squat and my highest PR was 275lbs.  

Finally, my senior year I joined the girls wrestling team. Wrestling is a very hard sport to compete in while having EB. I had to have a note saying I was able to wrestle because there was always a chance someone could use my blisters against me. The thing I enjoyed most about sports in high school is how they made me who I am today. Sports helped me prove that I can do everything that a normal student can do.  

6. As a freshman in college, what has your experience been like so far? 

So far in college, I haven’t had any issues with my EB. People still look at my sores, but usually if they do, they will ask about it.  

7. Please share with us your dreams and aspirations – both short and long term. 

As of right now, my main focus is on graduating college and majoring in psychology and minoring in criminal justice. My dream job is to work for the Behavioral Annalist Unit (BAU).  And eventually go around the world educating people about EB, meet people with EB, and help kids who have EB.  

8. What message would you like to share with others who do not live with EB? 

Always push yourself to be better version of yourself. Just because people talk, point, and stare doesn’t mean we aren’t just as able as they are. Never let what others say bring you down.  

9. What message would you like to share with others who do not live with EB? 

Before you say something to us about our skin, please watch how you word it. You may not be intending to put us down, but it does hurt. Always think before you speak. 

Thank you, Zora, for sharing your story! You can connect with Zora by sending her a message.

If you would like to contribute to the EB Connect Spotlight series, please send a private message to Aigerim

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