Merch Girl: The Story of Finding Beauty Through an Incurable Skin Disease

Photos courtesy of Merch Girl

Abbie Evans, aka "Merch Girl"

Meet Abbie Evans — an 18-year-old southern beauty who is the "merch girl" for her Dad's Austin-based band (i.e. the girl who sells merchandise at shows). Abbie is a fun-loving, ambitious young gal who won't let anything get in the way of achieving her dream of becoming a model —  not even her incurable disease, Epidermolysis Bullosa. 

Photo courtesy of Merch Girl

Those who suffer from EB are inconvenienced by fragile skin, frequent and sometimes disfiguring blisters, and often die from infection or cancer. However, with the care of her seven doctors and the unconditional support and love of her parents, Abbie is healthy, sprightly and ready to make her dreams come true.

Recently, a team of documentary filmmakers ventured to Abbie's hometown to not only follow her daily struggles with EB — which includes everything from preventing infectious skin lesions to getting an esophageal dilation every six weeks to keep her swallowing — but also to document how awesome she is in her coming of age years (and believe us, she's awesome!).

"I just want to make a really good film," director/producer Cary Bell said. "A documentary that not only teaches you about a disease you've never heard of, but entertains you and takes you on a journey. I've watched [Abbie] grow over the past three months from a teenager that doesn't know what she wants from life to a girl trying to figure it out. That is a great story." 

We had the opportunity to chat with Abbie about her disease and her passion for beauty and fashion, and within two minutes of our conversation we were smitten. Abbie is funny, fearless, and easily one of the coolest girls we've met. 

Check out our interview with Abbie below, we dare you not to fall in love with her! 

FashionEtc: Can you tell us a bit about what it's like being a merch girl? 

Abbie: It's so much fun and so entertaining. I think what I like most about it is the thrill of not knowing what's going to happen next. It's a new set of people every time and I just love it. 

FashionEtc: Totally! You must have all kinds of stories from being on the road. Any one in particular that stands out?

Abbie: time we left my dad at the gas station. 

FashionEtc: Oh my god.

Abbie: Yeah, we were driving for about twenty minutes before we realized he wasn't with us. He was pretty mad but it was funny.

Fashion Etc: Do you wear a lot of the merch?

Abbie: I did a lot when I was younger because I was so into it, but now I'm like 'dude. no way.' I'm way too into fashion now to wear that stuff. Give me some high-waisted jeans and some overalls.

FashionEtc: Sassy!

Abbie: Yeah...I think I'm starting to look like a hipster but I don't know if I'm into it. I just love all old clothing. I love vintage shopping, I can't get enough of it. It's so fun!

FashionEtc: So, your positive outlook on life is amazing. Have you always been that way or is it a day-to-day battle for you?

Abbie: I mean everyone has their bad days but I was born this way and learned about my disease really early on in life. I think you never really know how strong you are until it's the only thing you have to get you through and after awhile you just kind of learn to deal and well, I don't give a dang about what other people think! 

FashionEtc: Amen! We hear you're really into makeup! What are some of your favorite beauty looks?

Abbie: Don't even get me started on makeup. I'll make money and immediately want to go buy makeup. I could sit in front of the mirror and practice different techniques all day. Right now it's all about the cat eye and the smokey eye for this girl — I think I've gone through at least four eyeliners in the last three months. 

FashionEtc: Yowsa! So does your beauty routine intersect at all with your daily medical routine? 

Abbie: Yes and no. I use a lot of cover up, but I don't obsess over it. Back in elementary school kids and adults used to look at me strange and ask me if I was contagious. I hated it. But when I got to the fourth grade I just started to feed off it. I liked the attention and being the one people talked about, and I still do! 

FashionEtc: Do you think Epidermolysis Bullosa has changed your perception of beauty at all?

Abbie: It has definitely changed me. Everyone has flaws, but it's the inside that counts. There's makeup, there's fashion, there's plastic surgery, but that's not what really makes you beautiful. It's imperfection. The imperfections are what make you beautiful. You have to dare to be different! It's not about the clothes or the makeup, its about YOU in the clothes and the makeup. I mean, don't get me wrong, I love being sexy and smelling delicious, but it's not what's the most important.

FashionEtc: With all your interests in clothes and beauty, do you think you'd ever want to go into fashion?

Abbie: I've always wanted to model. I think it would be a great experience to walk in the heels of a model.

FashionEtc: Well, you certainly have the look and the attitude! 

Abbie: I think that most of all I'm someone who wants to go out and try everything. I'm ready for what's next! 

FashionEtc: Here, here!

Click here to donate to Merch Girl and help Abbie and the team make it to the 2013 film festival circuit!