My dancing friends didn’t understand why I couldn’t go ‘full out’ [at training] since I didn’t ‘look’ sick.”
I was diagnosed with ITP in 2018, when I was 17 years old and in the middle of Year 12 (I’m from Perth, Australia). Suddenly I faced a constant stream of ineffective treatments, including steroids where I couldn’t concentrate at school and IVIG doses that gave me meningitis. I had to skip school for twice-weekly blood tests and family members tried to help by testing me on schoolwork during 6-hour infusions. I was a dancer who trained nearly every day, but this had to be cut back as I would come home with bruises from rolling on the floor or from my pointe shoes. My dancing friends didn’t understand why I couldn’t go “full out” since I didn’t “look” sick.
I pushed through my Year 12 exams in between bouts of dexamethasone and even managed to place top 5 in my school! However, University the next year was out of the question because I would have to take too much time off. So as my friends all set off on their next adventure, I was still conquering weekly blood tests and trying to find a treatment that would keep me out of hospital every time I got a bloody nose.
During one appointment with my hematologist, I noticed a PDSA ad for the annual ITP Conference flash across the top of her internet browser. I joked that I should go to America and we all laughed at the absurd idea. However, when I got home, I realized that was exactly what I needed. So, with my platelets around 20,000, and boxes of steroids to get me through the trip, my hematologist allowed me to travel to the 2019 PDSA Conference in Washington D.C.
As an 18-year-old travelling alone and going to the United States for the first time, it was both a thrilling and life changing experience. I had never met someone with ITP before, and now there was a whole room full of people like me! I talked to so many people, including assigned mentors, the head of ITP Australia, a lady from Japan, patients, parents, and I even made friends with two girls my age who I still keep up with. It was like a big family. Everyone understood what I was going through, and I realized I was very lucky compared to the stories of so many others. I made plans to go back to America for the 2020 conference; COVID-19 put a stop to that, but I still stayed up all night for the whole weekend to attend the online conference and it was worth it! Getting to click a button and suddenly be a part of a video call with other teenagers, international patients or women was the best.
I’m so thankful to PDSA for helping me on my ITP journey. Thanks to information from the conference, I have now reached a manageable platelet range on Nplate® that I self-inject weekly. PDSA also helped with the funding for my trip to the 2019 Conference through a scholarship, which I will forever be grateful for. Thank you PDSA and good luck to everyone with ITP!