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Katie – Glutaric Acidemia, Type 1


Glutaric Acidemia, Type 1 – Age 23

I was diagnosed with Glutaric Aciduria Type 1 when I was 6 years old. The doctors tested me for GA1 because my 15-year-old brother had just got diagnosed. Before I was diagnosed, I had a very normal childhood and ate basically anything that I wanted to. I would complain of stomach aches, but we just thought I was being dramatic. Once I was diagnosed, I started to watch my protein intake a lot more. It was very scary being diagnosed later in my childhood because I was afraid that I would be looked at differently by my friends because I was having to watch what foods I was eating. At the time of my diagnosis, I was doing competitive cheerleading and learning how to do backflips. If someone saw me back then they would have no idea that I had a rare genetic disorder. I was an honor roll student and I took advanced classes throughout grade school to high school. Starting in 2nd grade, I started to be hospitalized at Cardinal Glennon Children’s Hospital in St. Louis, Missouri quite frequently due to throwing up and dehydration. It was tough keeping up with my school work while I was in the hospital, but I managed to keep all my grades up and I kept my friendships at school. Staying in the hospital multiple times throughout the year is what helped me decide that I wanted to be a nurse.

I am now currently a Licensed Practical Nurse and I am currently finishing my RN degree at William Penn University in Oskaloosa, Iowa. I am a part of the first graduating classes from their 4-year nursing program. I just accepted a job as a student nurse on the oncology floor at Cardinal Glennon Children’s Hospital, and I am working with a few of the nurses who took care of me as a child. I am very lucky to have had a normal childhood. I was able to continue doing cheerleading all the way until my senior year of college, and now I am also no longer on a low protein diet. I have learned that this disorder does not define my life. I am lucky to have this disorder because it just makes me unique.

Katie, Arnold, MO


(From the Spring 2022 OAA Newsletter)

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