Matt’s Story | Thriving with EB
You can watch the full video of Matt’s Story here (or down below).
I didn’t really mind the blisters and the popping and everything else so much when I was a kid. I was just kind of used to it. But school was always really, really hard. Having all the blisters and the abrasions on your face from any little thing. You get made fun of a lot. I was asked so many times I can’t even count if I was in a fire, if I was burned. And I was like no, I have a skin condition. Stuff like that just drives you crazy over time.
Finding a voice
I feel like with hip-hop you can be real. You can be blunt. It lets me get thoughts off my chest. It’s a way to vent. It’s a way to show my son that it’s ok to be open. The song Generations I wrote primarily as advice to my son and a letter to my father because we’re three generations now of epidermolysis bullosa.
The next generation
The first time that we had Eli home we did his blister popping for the very first time on our own and it took five hours straight. A whole lot of love and a whole lot of fear built together. It’s kind of hell at first but you just get used to it and it becomes a normal thing. It’s just like every other day. He’s getting on the go now a lot. He’s very mobile and happy all the time. Bouncing, always wants to play. Hip-hop and writing allows me to get my voice out there when I want to in a way that other people can understand it. I’ve come to a point where I want to raise awareness now.
My name is Matt. I go by Bullosa and I am thriving with EB.