Ed’s Story

Ed’s Story | Thriving with EB

You can watch the full video of Ed’s Story here (or down below).



Ed’s Story

Creativity is a big thing that’s helped me push through a lot of the struggles in my life. It’s given me an outlet to just let things go. It’s been a big way for me to become emotionally stronger.


Musicians in the house

Growing up my brother was the musician in the house. I was always envious of that. He started a band when he was just starting high school. They needed a bass player so I was like I’m going to learn bass. He started showing me some stuff. The first song I learned was Neil Young, Rockin’ in the Free World. I’ve definitely been through some interesting things trying to play guitar. I tried putting thimbles on my fingers. It didn’t work, but I tried. There are also these things you can get, like a kind of silicone thing that goes over top of your finger. They work. I just didn’t like the way the guitar sounded and it kind of took away from my ability. Yeah, it hurt in the beginning. I was constantly getting blisters. Actually all my fingers now are pretty much hard-tipped. They’re all built-in for guitar playing.



I feel like I’m so lucky to be able to form these calluses. It’s kind of a phenomenon, I think. Many people who have EB can’t do the same. When I was writing the song for the EB gala, I started to realize that there were a lot more people that had EB. One of the lines that came to me was, when I’m feeling alone I look around, there’s more of us than you think in this town.


The community

It’s nice to be able to through Mia Thrives meet some of these people. You know what man, as long as I’m breathing, I’m a happy camper.

My name is Ed VanDyk and I’m thriving with EB.


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