Why hobbies are important in life with epidermolysis bullosa

When I reflect on my experience with recessive dystrophic epidermolysis bullosa, one thing that has helped me get through the toughest times is my hobbies.

My mother always told me that from the time I began talking, I was also singing. She knew this could become an important part of my life, so she encouraged me to sing and always had music playing in the house. Soon after, I received a small musical keyboard for Christmas.

When I got that keyboard, I began listening to the built-in preset songs and playing the notes by ear. My mother noticed that I was catching on quickly, and together, we decided that I would sign up for piano lessons.

Recommended Reading

June 1, 2026 Columns by Leslie Morris

Living with EB, I’ve learned to adapt and prepare for tough days

I was very excited to learn how to play. My first few lessons went well, and my teacher taught me the keys and their corresponding notes.

Eventually, they introduced full chords. This is where I began having serious difficulties. Due to my webbed fingers, I was unable to continue piano lessons.

Realizing this was difficult as a young child who was already struggling to fit in with other children and participate in the same hobbies. Being told I would be unable to develop my piano skills really discouraged me. I took a break from playing the keyboard and fell back on my second hobby: video games.

Video games were a great distraction from my daily pain. They also helped me connect with other children at school and make friends. Game controllers were often difficult because of my hands, but I always found a way to adapt.

Practice, patience, and determination

A couple of years later, my mother got me another keyboard for my birthday. This time, it was a full-size one that allowed me to record my own creations. At first, I still felt discouraged, thinking I might never play effectively. However, I set up the keyboard in my bedroom and began playing when I got home from elementary school each day.

I started learning songs from my favorite video games. At one point, I taught myself to play with two hands. Once I became more efficient at this, I began learning songs from my favorite artists and bands by ear.

Leslie Morris plays piano in his living room in 2015. (Courtesy of Leslie Morris)

After a few years of practice, I began participating in local music events, playing and singing a mix of my own songs and covers. I ended up meeting some talented friends who also played instruments. A group of us got together and began performing local shows. We also created two albums.

The experiences I’ve had through music have left a lasting positive impact on my life. I now have an electric portable grand piano that I play all the time. Not only have I learned to play with two hands, even as my hands have changed over the years, but I have also learned to sing and play at the same time.

I have taken a break from performing live to focus on college. However, I still sing and play the piano frequently.

Hobbies are very important for people with epidermolysis bullosa (EB). They are part of self-care and a way to distract ourselves from the pain we face daily. Not only that, but my hobbies have shown me that with enough practice, patience, and determination, I can adapt to almost anything. I also feel that playing piano and video games has helped me maintain hand mobility over time, as I have not needed hand surgery.

If your child has EB, please encourage them to explore their hobbies and talents, and support them through discouraging times. Some activities may be more difficult than others, but learning to adapt can inspire others to do the same.

Note: Epidermolysis Bullosa News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Epidermolysis Bullosa News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to epidermolysis bullosa.