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 Jennifer Kim, a Statistician/Data Analyst from CA who lives with EB Simplex. She is also a loving mom to 15-year-old Bowen Kim who also lives with Simplex.
1. When were you diagnosed with EB? Please tell us about you and your family’s journey learning about the diagnosis.
I was born and raised in Korea until I came to the States to attend graduate school. My parents took me to so many different doctors hoping to cure my blistering, but no doctors were able to diagnose my condition back in Korea.
I found out that I have EB simplex when my son did a gene test when he was one year old.
2. What are some challenges, if any, that you’ve faced as an individual with EB? How did you overcome them?
South Korea has very humid weather. Growing up, nobody around me understood how painful my blisters were. Since I have localized blisters, mostly feet and hands, people did not see them and took me as normal child. With all the pain, I had to participate in physical education and go on walking field trips, but still could not participate in serious sports such as Tennis or Soccer.
Learning how to live with my condition without feeling bad for myself is how I overcame with EB.
3. What brings you hope when you are having an especially challenging day?
My blisters are very painful. However, they disappear when I rest for a few days. I am glad that I can manage my condition at least. Reading some pharmaceutical companies’ research on EB, I still have hopes that there may be a cure someday.
4. What is it like also having a son with EB? Have you met anyone else with EB?
My biggest pain is to see my son suffering from EB. The huge guilty feeling towards him brings me sad days when I see him limping and not able to do outdoor sports.
5. Does your EB present any challenges in your job? If so, how have you managed it?
I am a statistician. Luckily, my job does not require any physical labor. Now that I know that there are many people with EB in the world, I am hoping that I can be helpful in many ways.
6. Please share with us your dreams and aspirations – both short and long term.
My short-term dream is to help my son to excel and thrive in his high school. Although he has more serious EB than I do, he has so much passion for his academic and extracurricular activities. Until he reaches his goals, I will try my best to support him.
My long-term dream is to get treatments to cure EB. Until then, I want to participate in the EB community and help others with similar conditions.
7. What message would you like to share with others impacted by EB?
When I was young, I always hid my blisters and acted normal. I was shameful that I was not the same as others. My big regret! Please don’t be shy about telling others about your EB and showing others your blisters. Please develop your talents regardless of your condition. Please realize that you are not alone.
8. What message would you like to share with others who do not live with EB?
Don’t judge people with EB. Don’t avoid people with EB. EB patients did not get EB from what they have done wrong. EB is not contagious. When someone is having pain, please offer to help.
9. How did you hear about debra of America?
From my son’s dermatologist – Dr. David Woodley at USC.
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 joined a couple of webinars and enhanced my knowledge about EB, including “Skin Infections with EB”, “Butterflies keep flying book reading”, “Genetics of EB”, “Basics and updates in management of EB simplex: what is complicated about EB simplex” (I enjoyed this one the most this because I have EB simplex myself).
I plan to attend as many as webinars going forward. After COVID-19, I am hoping to participate in person and meet more experts.
Thank you, Jennifer, for sharing your story! You can connect with Jennifer by sending her a message or find her in the Simplex Group!
If you would like to contribute to the EB Connect Spotlight series, please send a private message to Aigerim!