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 32-year-old Aaran Schrader, a paddleboarder from New York who lives with Junctional EB.
My name is Aaran Schrader. I am 32 years old and live in Lockport, New York. I was born weighing 9 pounds, delivered by c-section. Right at birth, so I am told, I had spots of skin missing on my legs, arms, and back. The doctor and nurses knew and were able to prepare for my care, because I had an older brother, who is 5 years older, who also has EB.
Experiences growing up with an older brother with EB helped my parents and also me as far as what they knew on how to deal with the disorder as far as wound and blister care and medical attention. In the early 80s when he was born, there was not much was known about EB so there was some trial and error which later helped us determine what was best for us and our form of EB.
In 1989, when I was 16 months old and my brother was 6, we participated in the National Epidermolysis Bullosa Registry at the Rockefeller University in NYC. There we had biopsies done.
EB has limited me to very little. Its only taught my limits. But hobbies include stand up paddle boarding and grilling /smoking. I enjoy stand up paddle boarding because it’s something relaxing to do outside in the summer. I live close to Lake Ontario, so it’s nice to get out and catch a sunset. And on most clear nights, you can see the lights of Toronto from across the lake. As far as cooking goes, I love using my Traeger wood pellet. Grill/smoker. Favorite things to make on it are pork butts for pulled pork, beef brisket and ribs. That specific grill allows for many things to be done on it including baked goods.
My message to others who don’t live with EB is: Please ask what it is I have and don’t stare. Spreading awareness is key.