Young Leadership Committee member, Andrew Conrad: My Life with EB

Throughout 2014, debra of America Young Leadership Committee member, Andrew Conrad, dedicated monthly posts to sharing his EB story. He wrote about what it was like when he was younger, his college days, the challenges he’s overcome, and how he continues to spread awareness for the disorder.

APRIL 2014
For this month’s post, I was given the opportunity to view the new documentary Butterfly Girl, by director Cary Bell, about a girl named Abbie Evans. Abbie Evans was born with recessive dystrophic EB and the film follows her during her early adult life as she tackles the challenges that many of us with EB experience every day. The main focus of the film is her relationship with her parents as she shares time between her divorced mother and father, while Abbie attempts to become more independent. The film is currently on tour throughout the United States, debuting at last month’s SXSW film festival in Austin, TX. Chicago will have the honor of being another destination for the film, debuting at the Chicago International Movies and Music Festival on May 1. More information can be found at the festival website:

Butterfly Girl Movie Poster

Being a person living with RDEB every day and going through many of the experiences that the film portrays made it; very difficult for me to  sit down and watch the film all the way through. I try and live my life by requiring EB to take a backseat, so it’s not every day that I am presented with a film that brings so many memories of my childhood back to the forefront. Abbie’s first experience with EB occurred shortly after she was born as her doctor  wiped her down and accidentally tore the skin from her lower leg. Some of the most telling experiences are detailed through her parents’ eyes as they were presented with the joy of having a new born baby girl, followed  by the sudden shock of her being born with an extremely rare skin disorder. I imagine it to be very difficult for parents in this situation.

I was born in SW Memorial Hospital in Houston, TX completely devoid of any signs that I had the disease. When the nurses squeezed my heel to take blood, a huge blood blister emerged but it wasn’t until 6 weeks later that I was diagnosed with EB. I started getting blisters all over my hands as I started putting my fingers in my mouth as most newborns do. My parents became concerned when the blisters healed but produced scarring. The film mentions how Abbie slept on her father’s chest for the first few years of her life, because if she was left to sleep alone in her crib, she would kick the skin off her legs. I suffered similar problems and still occasionally do. My mom had me sleep on sheep skin and the cushion help tremendously. She tells me that watching me learn to crawl and walk was also quite traumatic. I developed different strategies for learning how to crawl without scrapping my knees and hands. As I learned to walk, falling caused enormous anxiety for everyone in the family. She tells me that I used to pass out from the pain when I would fall and scrape my entire palms or knees off and then scare my mother almost to death by passing out from the pain. When I came to, I would fall back asleep for hours on end due to the stress of the experience. I know that many of us with EB have similar harrowing tales of growing up.

Butterfly Girl Movie

Butterfly Girl is an empowering film that shows one girl’s determination not to let a life-threatening and debilitating skin disease, such as RDEB, define her life. Her desire to become independent of her parents, go to college, travel, and overall do life on her own terms is something for which every teenager longs. For me, moving through my early adult years was different from most because, as I was leaving for college the rest of my family moved overseas to Singapore. I never really thought that RDEB would limit me from living the life I desired, so it didn’t even occur to me that living on my own would be more difficult than for some of my peers. My determination was tested, but as with Abbie, there is a spirit of endurance and determination which causes us to move toward trying to make EB a livable, if not positive, experience that we can use our lives to encourage others. For anyone who has had any connection or experience with EB, I highly recommend seeing this film. I will be in Chicago for the screening on May 1st so feel free to drop me a line at andrew [dot] conrad2 [at] gmail [dot] com and make sure you come up and say, “ hi” at the festival.