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 15-year-old Bowen Kim, a talented violinist and active member of his school’s Speech & Debate team.
1. When were you diagnosed with EB Simplex? Please tell us about you and your family’s journey learning about your diagnosis?
Although my mother has EB Simplex, she had thought that none of her children would be diagnosed with it. However, when I turned one and began to crawl, they noticed blisters forming on my kneecap, toes, and feet. My mother wanted to confirm that I had EB and took me to an EB Specialist at the University of Southern California Hospital. A dermatologist there confirmed that I had EB Simplex from a gene test.
2. What are some challenges, if any, that you’ve faced as a young man with EB? How did you overcome them?
Growing up, there was a lot of pressure to participate in sports. Before I entered my teen years, my EB was manageable and I was able to participate in Basketball. However, as I began to enter my teen years, my blisters grew worse. After running for just 20 minutes, I developed large blisters that prevented me from playing for the next few days and force me to limp for the next few days. Going to school was also difficult for me as I had to explain what EB was. My EB is mostly localized on my feet so I was unable to show my teachers what EB looked like and how severe it could be. They were not able to relate to the pain and often underestimated the severity of EB. I was always the odd one out because I was unable to participate in Physical Education. On hot days, I would limp to the extent where I would have to lean on a friend or a railing. However, I was able to deal with these problems because of the friends that I surrounded myself with. They were very understanding of my disability and helped to carry my backpack and kept me company on school trips when I had to sit out.
3. What brings you hope when you are having an especially tough day when it comes to your EB?
For me, my hope comes from being inspired by others. I look up to other teens that deal with EB. I have met many teens that have harsher forms of EB at Camp Wonder, an annual summer camp that invites children with skin diseases. I feel that those who have harsher forms of EB are mentally stronger as they have gone through events far more difficult than mine and have overcome many more barriers in their lives.
4. Have you met another person with EB? If so, what was that experience like?
I am fortunate enough to attend Camp Wonder, an annual summer camp that invites children with skin diseases. Before attending the Camp, I had always imagined that I was the only person with EB. However, while attending the camp, I met many teens and adults that have EB and was mind–blown at the different experiences. We were all able to relate to the unique stories we all shared.
5. How did you get involved with Speech and Debate at your high school? What do you enjoy most about being a part of that club?
Because I was unable to participate in sports, I searched for other activities that I really enjoyed. I found that I had a passion for public speaking and decided to join the Speech and Debate team at my school. It is awesome to be able to voice my opinion on controversial issues.
6. When did you learn how to play the violin? Does your EB present any challenges with playing an instrument? If so, how have you managed it?
I vividly remember watching an orchestra and being awed by the music at the age of four. After I turned five, I was given my first violin and began lessons. Violin has given me another voice allowing me to express my emotions in a way that I can’t with talking. However, as I began to practice more, it became apparent that EB would limit the amount of time that I would be able to play the violin. Violin uses the pressing down motion of your finger on the string to create different pitches. As an EB patient, the pressure that was put on my fingers created blisters preventing me from practicing and playing to my heart’s desire. I try not to overdo my violin playing, although I still do receive blisters and am still searching for a solution.
7. Please tell us about your experience tutoring children in Africa via Zoom! How did you get involved? Are there any memorable moments that you would like to share?
One of my friends found an opportunity to tutor children of a Christian missionary who wanted his children to learn conversational English. So, I gladly took on the challenge. Every night, I prepare a short lecture and picture books to read aloud over video. It is very rewarding to hear the children’s voice say the words and sentences that I taught.
8. Please share with us your dreams and aspirations, both immediate and/or long-term. What are your current and future goals?
For now, my short-term goals are to adjust well to online schooling for the next year. I want to be able to achieve as much as possible at school although in the online setting. However, in the future, I want to in some way be able to contribute to finding a cure for EB. I am currently very interested in science and want to be able to study EB and hopefully develop treatments for it.
9. What message would you like to share with other teens living with EB?
I want to tell other teens living with EB that each of us is truly special. We should not be ashamed of our condition and know that we are mentally stronger than others. We each have our own passions and nothing should stop us from pursuing them.
10. What message would you like to share with teens who don’t live with EB?
I would like for teens who don’t live with EB to be more accepting and to help those who need it.
11. Is there anything that you would like to add?
I am currently trying to create an organization that spreads awareness for EB among local communities. So far, I have hosted an online Poker Tournament and donated the proceeds to debra of America. I am also assembling a youth group to publish Weekly News about EB.
Thank you, Bowen, for generously sharing your story! You can connect with Bowen by sending him a message on EB Connect.
If you would like to contribute to the EB Connect Spotlight series, please send a private message to Aigerim Saparova-Smith.