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 Faith Smith, a college sophomore with Junctional EB (JEB) studying to become a teacher.
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 Epidermolysis Bullosa about three days after I was born. Although, my family didn’t find out what type of EB I had until a couple of weeks later and that's when the doctors diagnosed me with Junctional Epidermolysis Bullosa. When I was born, I was missing skin on my hands, feet, and parts of my legs. I was rushed to the children’s hospital in Minneapolis, and that's when they took a skin biopsy that then diagnosed me with EB. They also told my parents that I would most likely have three weeks to live. It was a very long journey for my parents. I was at the children’s hospital for the first three weeks of my life, and it was a learning experience for everyone. I wasn’t able to have any of the breathing or heart monitors on me because they would have torn my skin, so the doctors and nurses kept a pretty close eye on me for those three weeks I was there. My parents were at the hospital with me morning and night. When I was finally able to go home with my parents, there was still a lot to learn, but my parents had amazing support from all of our family and friends.
2. What are some challenges, if any, that you have faced as an individual with EB? How did you learn to overcome them?
Everyday seems to bring a different challenge. Whether it is a little bit more difficult to walk due to a blister or any open wound that may be healing that can make it hard to move because it becomes a little stiff. Although these are challenges I face day to day, they are minor compared to some other challenges. Some other challenges that I face are not being able to participate in any activity for I could easily get hurt. It’s not always easy to sit on the sidelines and be an observer all the time. Although, with this, I look at the positives. For everything that may be more difficult or my condition limits me from participating, there is always more that I am capable of. Such as, I may not be able to do sports like my brother, but I am able to participate in musicals, or public speaking events which I love. But one of the biggest challenges that I faced recently was that I was having trouble eating. I would choke at every meal every day. So in 2018 I went through the process of widening my esophagus and to this day I have had no problems. During that event I learned a lot about myself. I learned that I am truly blessed to be able to live my life the way I want to even though I have some limits.
3. What brings you hope/joy when you’re having an especially tough day?
When I am having a tough day, what brings me hope is my family and friends. Especially my brother. My brother is my best friend and he has always seen me for me and not my condition. He doesn’t bubble wrap me and he gets me to do things that are out of my comfort zone that he knows won’t hurt me. He taught me how to play baseball and basketball. He makes me a better person every single day and I honestly don’t know what I would do without him. My parents are always there for me and they are always there to support me know matter what. I have one true best friend who I know I can always lean on when I need someone the most. My family and friends are my light on my darkest days even if they don’t know it.
4. Have you ever met another person with EB? If so, what was that experience like?
I have met multiple people with EB and it has always been one of the best experiences. I met some others during EB gatherings in Florida when I was 5, 6, and 11. I have also met people who have EB at Camp Discovery in Cross Lake Minnesota when I was 13 and 14. It is so amazing to be able to share stories and my own experiences with those that can relate. It’s also truly nice to know that I am not in this alone. At times, it feels like I am alone because nobody around me feels what I feel on a day-to-day basis. Then I stop and realize that I am not alone, there are many out there that face what I face and more daily.
5. What are your hobbies? Does your EB present any challenges in any of these?
I love reading, writing, and art. I also love being outdoors and I am into hunting, fishing, and four-wheeling. My family is really big into hunting and fishing so that is how I got into it. I use a crossbow due to the fact that pulling back a compound bow would cause blisters or my skin on my fingers to tear. I also gun hunt and it took some convincing to get my dad to agree to let me gun hunt because he didn’t know if my shoulder would blister or not, but I have been gun hunting for the past 5 years. Through hunting, fishing, and fore-wheeling I get to spend a lot of quality time with my family which I enjoy. My family is everything to me so being able to spend as much time with them as I can is pretty special. My grandparents live on a farm so we do a lot of four-wheeling/trail rides there. We spend almost every weekend at the farm. I love being around the animals and helping out when I can. I also love riding horses. My aunt has a horse so I go and ride with her and my little cousins every chance I get.
With these activities I wouldn’t say that they present many challenges. I just have to be more cautious than others. When I go out hunting I am not able to get into a tree stand, it is either a ladder stand or box blinds. So, I am not able to hunt some of the same spots that the rest of my family has the opportunity to. There are times when I have to take a break from driving the four-wheeler due to the fact that it can cause some blisters at times. When I go horseback riding, I am more cautious. I don’t gallop or even canter for that matter. I more so love being around horses and having that opportunity to be able to ride. I wouldn’t say I am limited to only walking or trotting, it's more so getting the courage to canter or gallop. I would love more than anything to show horses like my aunt and little cousins, but to me it's the fact that I can even do this activity that makes me thankful.
6. How has your experience as a college student been?
I am currently in my sophomore year at college. I am going to school for elementary education. My freshmen year I lived in the dorms, but didn’t have a roommate. I wanted to meet people first and inform them about my condition before living with someone I just met. The floor I was on had many amazing people. They were understanding and made me feel welcome. All the girls on my floor accepted me. I still am in touch with the girls today even though most of us are living at home or some on campus due to COVID. I met my closest friends in my classes. I loved being on campus and having that independence. It proved to me that I can do it on my own. This year though I am living at home, so I don't really get to see any friends that I made last year. Although being at home I get to see my best friend from high school and middle school pretty often. Overall I really enjoy college even during these strange times. I love my classes and I cannot wait to become a teacher someday!
7. What message would you like to share with others impacted by EB?
A message that I would like to share with others who have EB is; no matter what, always be true to yourself. EB is just a part of who you are, it’s not all of who you are. Never be ashamed or embarrassed of your condition. Embrace who you are, take every opportunity you can to inform others on EB. EB should never define you. You are stronger than you know and don’t let others tell you otherwise.
8. What message would you like to share with those who don’t live with EB?
Something I would like to share with those who don’t have EB is that we are just like anyone else. Our skin may look different from yours and we may have to be more cautious with daily activities, but that doesn’t mean we are not human. Another thing is that many of us notice when people stare or make rude comments. I’ll be honest that has never truly affected me but I know that it can affect others. I am one who would rather have people come and ask me questions than to just assume. I am one who will always take the time to explain my condition to someone who may not know or understand what it is. So, don’t be afraid to ask!
Thank you, Faith, for sharing your story! You can connect with Faith by sending her a message.
If you would like to contribute to the EB Connect Spotlight series, please send a private message to Aigerim!