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 Abby Jones, a 13-year-old YouTuber from Alabama who lives with RDEB.

1.When were you diagnosed with EB? Please tell us about you and your family’s journey learning about the diagnosis.
I was diagnosed with EB at birth. At first, Mom didn't have any idea what EB was until she did research and met someone else with it. 

2. What are some challenges, if any, that you’ve faced as an individual with EB? How did you overcome them?
Band is a challenge, but I fight any pain I have because I love band and won't let pain stop me. 

 

3. What brings you hope when you are having an especially challenging day?
Singing and my older sister. 

4. Have you met anyone else with EB? If so, what was that experience like?
I have. It was fun. 

5. We heard that you create YouTube videos! Tell us a bit about this!
I use an app called Gacha Life to make anime looking videos. I also do games, mostly roblox. 

6. What are your favorite hobbies/interests? Does your EB present any challenges in these? If so, how have you managed it?
I love to sing and draw/paint. Sometimes EB makes it hard but I fight it. 

I am also a Cadette in the Girl Scouts and am working towards my silver award!

7. Please share with us your dreams and aspirations – both short and long term.
I want to become a nurse. 

8. What message would you like to share with others impacted by EB?
Don't let the pain stop you from doing what you love. 

9. What message would you like to share with others who do not live with EB?
I may look different but just know, we are the same by heart. 

10. Have you had a chance to check out some of the Virtual DCC webinars on the “Events & Webinars” tab? Which presentations did you enjoy most or which ones are you going to check out?
I have only watched one and it was art related. I loved it. 


Thank you, Abby, for sharing your story! You can connect with Abby 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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