I was diagnosed with ITP when I was six years old after a rash appeared on my chest. My mother took me to my pediatrician, where I was told I had a concerningly low platelet count and was referred to a hematologist/oncologist. We were at first scared of the possibility of leukemia due to my low platelets and easy bruising and bleeding, but we soon found out I had ITP, a rare autoimmune disorder where my body mistakenly attacks my own platelets. A lot of my diagnosis is a blur to me because I was so young and never really knew exactly what was going on.

It wasn’t until I got older that I began to realize I was sick. I was always covered in large, dark bruises and constantly in and out of the clinic, trying different medications and treatments and missing school. My mom had to get notes from my doctors explaining the bruises, so the school didn’t think I was in an unsafe home. I would often have to leave school to go to the hospital because my lab results would show platelet counts as low as 9,000. I played softball for almost 10 years and remember always being careful to not get hit by the ball because of the risk of bruising and bleeding.

In the third grade, I missed a lot of school because I had to go to the hematology clinic and get treatments that would take up the whole day, and I was getting blood drawn what felt like every week. I was just a child – and I was scared. I would freak out before getting poked with a needle, and IVIG was the only treatment that could raise my platelet count, and even that would just be a temporary fix.

In April 2014, we decided to remove my spleen, which my care team believed was the primary cause of my ITP. But during what should have been a quick laparoscopic surgery, I began bleeding internally and they had to open me up to stop the bleeding. The surgery ultimately brought my platelets up to a manageable level, but they still remain on the lower side.

At 19, I am now better able to handle my ITP, but I still have to be careful. I have to get clearances from my hematologist for small operations like getting my wisdom teeth removed or a tonsillectomy, and there is always a constant worry in the back of my head that something may go wrong. There are so many little things that people without ITP don’t have to worry about, but I do. My ITP causes me a lot of anxiety, but knowing there are others like me out there makes it better.

When I think back to my childhood, my hospital stays and treatments are my earliest memories. I was there all the time, but the nurses at my clinic made me feel so safe. I am now a freshman in college and pursuing a nursing degree. I hope one day I can work in a pediatric hematology/oncology unit and comfort and care for children just like me.