I was born with Bladder Exstrophy, a rare birth defect that occurs in 1 out of 50,000 live births, where the bladder and associated structures are improperly formed. Throughout my childhood I’ve had fourteen surgeries to make my life as “normal” as possible. To manage my condition, it requires different techniques just to empty my bladder and prevent serious infections. For example, I’ve had to visit the nurse’s office every two hours to cath myself, as far back as kindergarten. Since birth, I’ve both worn diapers or pull-ups and dealt with constantly being teased. Despite cathing every two hours to prevent reflux into my kidneys, I’m still incontinent. I wore pull-ups till I was large enough to fit the larger Poise pads, which I now use.
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At first, I attempted to keep my medical issues secret, to feel "normal" and to not place myself in a situation where I could be teased. I've since realized I need to not hide these anomalies which make me who I am, but to embrace them and show everyone that these differences and challenges make me the strong person I am today. During my sophomore year of high school, I was a three-sport athlete. Despite my disability I made it on to the Varsity Tennis, JV Basketball, and JV Softball teams. However, in the middle of basketball season, my back began causing me severe pain. I ended up visiting a spinal surgeon. From him, I learned I had a splayed pelvis, with a bone missing that was supposed to hold it intact, all caused from my Bladder Exstrophy. The surgeon said I had minimal back support and that hip pain would prevent me from running on hard surfaces. He also said there was no way to correct it and recommended I switch to biking or swimming. I was devastated and didn't want to give up the sports I loved. I decided I would not give up all this hard work. So, I asked the doctor if there was any way I could still play these sports. He said I could try physical therapy to strengthen my stomach muscles and back muscles but it would be difficult. I took on the challenge, and it was incredibly hard! I went to the physical therapist often and would shake because …show more content…
During the 17 years my family has provided this service, my duties have included putting together songbooks, campfire programs, games, crafts, and nametags. We offer both recreational activities and educational sessions. I help come up with suggestions for the topics and our keynote speakers, who are pediatric urologists from around the country. Three years ago, I also began leading a discussion group so that every girl attending could have her questions and concerns addressed. I also share my personal experiences with the parents of these children, encouraging them to not worry and explain their child will be
At first, I attempted to keep my medical issues secret, to feel "normal" and to not place myself in a situation where I could be teased. I've since realized I need to not hide these anomalies which make me who I am, but to embrace them and show everyone that these differences and challenges make me the strong person I am today. During my sophomore year of high school, I was a three-sport athlete. Despite my disability I made it on to the Varsity Tennis, JV Basketball, and JV Softball teams. However, in the middle of basketball season, my back began causing me severe pain. I ended up visiting a spinal surgeon. From him, I learned I had a splayed pelvis, with a bone missing that was supposed to hold it intact, all caused from my Bladder Exstrophy. The surgeon said I had minimal back support and that hip pain would prevent me from running on hard surfaces. He also said there was no way to correct it and recommended I switch to biking or swimming. I was devastated and didn't want to give up the sports I loved. I decided I would not give up all this hard work. So, I asked the doctor if there was any way I could still play these sports. He said I could try physical therapy to strengthen my stomach muscles and back muscles but it would be difficult. I took on the challenge, and it was incredibly hard! I went to the physical therapist often and would shake because …show more content…
During the 17 years my family has provided this service, my duties have included putting together songbooks, campfire programs, games, crafts, and nametags. We offer both recreational activities and educational sessions. I help come up with suggestions for the topics and our keynote speakers, who are pediatric urologists from around the country. Three years ago, I also began leading a discussion group so that every girl attending could have her questions and concerns addressed. I also share my personal experiences with the parents of these children, encouraging them to not worry and explain their child will be