Hi, My Names Gwen and I'm 16 years old. And 6 years ago I was diagnosed with Secondary Ciliary Dyskinesia.
My whole childhood I couldn't do what other kids could. I was constantly sick, I switched inhalers, and started taking allergy medication at a young age. I felt different from other kids and even left out when I couldn't play tag or even run around on the playground. Doctors and even school nurses just called me over dramatic because of most of my symptoms. When I went to a ENT he suggested seeing a Pulmonologist and described my symptoms. By 6th grade I had my first Bronchoscopy and was later that month diagnosed with SCD.
I later went on to have 3 bronchoscopy's, 2 sinus surgeries, a tonsillectomy, and adenoid removal. My freshman year of high school I had the smallest wheeze in my lungs, which was not uncommon for me. I then spiked a fever of 104.6 and its continued grow. I was taken to the hospital and put on leviquinn for the first time. It worked but I was scared for my life the whole time. I struggled to breath and barely got any sleep while in the hospital.
Each time i miss school due to my illness I have to make up the classes...... even after my surgeries. and exercising is hard enough as is. I have a 504 plan at school, but it does little to nothing for me due to my schools incompetence.
During my last surgery my doctor diagnosed me with Primary Ciliary Dyskinesia. It didn't really effect me at first until I realized I have to live with this my whole life. Due to me missing school no one really takes me seriously and looks down on me. I love to sing, dance, and act. but its hard to do when I get sick. I use a smart-vest everyday and even double up on it when I'm sick. I don't think anyone gets how different I feel. I know it sounds silly but I'm not normal and I never will be.
I just need to start being okay with that. So thank yo for having places like this where I can share my story and grow more as a person.