ITP Warrior - Kaitlyn

I was diagnosed with ITP at age 20 – and it was a long process. I was a college athlete, performing as a majorette in my university’s marching band, the East Tennessee State University Marching Bucs. After long practices, I would feel unwell, but I brushed it off as just being exhausted. But the exhaustion seemed to never end.

I visited my primary care doctor complaining of dizziness and numbness and was referred to a hematologist. It was clear that I was anemic; I was deficient in vitamin B12 and iron. However, my bloodwork revealed more problems, including a platelet count of 30,000.

I was involved on campus and working at the same time. My initial thought was, “maybe college is just stressing me out,” but that was not the case. My platelet count continued to remain low. As a result, my hematologist told me I needed to limit any activity in which I risked getting injured. I had to quit performing as a majorette, which was extremely hard to do. But I knew it was what I had to do, considering my health. When I would accidentally hit myself with a baton, I would get black eyes that seemed to take forever to heal, and bruises that would take insanely long to go away.

My first visit to the hematologist occurred after marching season, in late 2021. After four months of not knowing what was wrong, I finally received a diagnosis in April 2022 after a bone marrow biopsy ruled out any cancers or other blood disorders I could have had.

After my diagnosis, I was prescribed the steroid prednisone and started taking it in the summer of 2022. I had researched the medicine and it looked like there were some successes with using prednisone to treat ITP. However, prednisone distorted my face shape and made me gain weight, and it shook my confidence.

After six weeks, I was taken off prednisone and I felt like a new woman. My platelets had increased to 100,000, and my face began to look normal again. From July through September 2022, my platelets remained at a good level.

Then, October came. I went to the hematologist for my monthly checkup and my platelets were low. My platelets hadn’t been low in months, and I just kept thinking to myself, “steroids will not help this time.” I am getting checked again to see if my platelets could go up even a little bit, but if not, I will have to resort to another style of treatment. Ultimately, I am staying positive throughout my ITP journey. Discovering PDSA has inspired me to share my story. When I thought I was alone and no one quite knew about my ITP, researching about PDSA and hearing other people’s experiences encouraged me.

Since high school, I have had a love of baton twirling. I twirled baton for 3 years in high school and then tried out for a collegiate line at the East Tennessee State University Marching Bucs in the pandemic year of 2020. I was on top of the world. I, unfortunately, had to quit collegiate baton twirling after two years due to my platelets being under 20,000, which led me to be very prone to internal bleeding and bruising. When I was hospitalized at 16 for a dangerous case of meningitis, my platelets were dangerously low. I thought that was the end since I was extremely sick at the time. In college, I would have periods of weakness at band practice that would take hold of my body. I didn’t feel like the same person anymore, but I won’t let ITP define me and the rest of my college journey.

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