Personal Narrative: My Experience With Bladder Exstrophy

One of my most difficult experiences has been going through school with an invisible disability. I was born with Bladder Exstrophy, a rare birth defect where the bladder and associated structures are improperly formed. I have endured fourteen surgeries to make my life as “normal” as possible. Despite this, as a young child, I decided to not let this condition define me or keep me from doing anything I wanted. Since first grade, I have had to catheterize every two hours, even during school. I’ve been responsible for making sure my supplies are stocked, remembering to go to the nurse’s office to cath myself every two hours, irrigating my bladder nightly and taking medication on time when prescribed.

Seventeen years ago, my family organized an annual campout for those with Bladder Exstrophy, offering emotional, educational, and social support. This campout has been highly successful, with over one hundred participants coming from around the world. My duties include coordinating activities, campfire programs, supervision, leading discussion groups for the girls with Bladder Exstrophy, and sharing my experiences with their loved ones. When my parents can no longer run our camp, I plan to continue what they started so I can continue to provide support not only for myself, but everyone else within the Exstrophy community. I also intend to raise a therapy dog to help children, both at the campout and in the hospital.

I have experienced firsthand the trials of a teenager living with a disability. Life is difficult, but I’ve learned if you stay positive and make good choices, things will invariably get better. I also plan to be a counselor each summer at the Youth Rally camp for those with bowel and/or bladder disorders, teaching them the importance of doing what they love and not letting their disability hold them