Join my team!

 Thanks for checking out the team page!! I hope you will join me for a VIRTUAL WALK to raise money for a great cause. If you sign up on my team, you commit to walking at least a mile during the month of September. I will be walking on September 24th, which is the official ITP awarness day. Don't know what ITP is? Here is the official definition: 

Immune thrombocytopenia (THROM-bo-si-to-PE-ne-ah) or ITP is a rare autoimmune condition that can be as challenging to pronounce as it is to live with. Characterized by low blood platelet counts, you may hear ITP called by its original name of idiopathic thrombocytopenic purpura. Historically, “idiopathic” was used because the cause of the condition was unknown. Today it is known that ITP is caused by the body’s immune system destroying healthy platelets which leads to easy or excessive bruising and bleeding, debilitating fatigue as well as a roller coaster of emotions and ongoing medical management.

 So what does that have to do with me?

My Story

My journey with ITP started in 2018. I got the flu, so I had to stay home from school for a few days. When I went back to school, I started noticing little red dots all over my skin. Fifteen days later, the spots became worse and my mom took a picture to send to a friend asking if I had a rash. It turns out the “rash” was actually petechiae and my platelet count was 8,000 -- we found all that out at Urgent Care. My doctor started me on steroids. It was terrible. I hated the way it tasted (I even spit out ice cream all over after tasting my first dose) and the way I felt. After a few weeks, steroids weren’t working, so we tried IVIG. After the treatment I felt like I was in another world. I sat by the fireplace and stared off into space. The only time I smiled was when my mom’s friend/my creativity teacher stopped by and gave me a cute stuffed puppy (named Rossco). My platelets went up and we thought I was in the clear.

In 2020 (you know that year? The pandemic year when COVID ruined everything), I started to feel bad again and got some petechiae but no bruises. We went to get my levels checked about an hour and a half away as our normal visit every six months. When we got the counts we were all so surprised with how low they had gotten. My counts were 19,000!! I started to feel really tired and one day I came home with an awful headache. My mom called my hematologist because I had hit my head on the trampoline a few days before, and with counts so low, it could be dangerous. On December 1st I got a CAT scan because of the headache, and luckily all was okay. But I still felt awful. During this time, I was supposed to start volleyball on a club team, and I was so excited about it. But with my platelets being so low I had to wait.

After a few more doctor appointments and some missed school days, we decided to try IVIG again. We had to travel to Atlanta for the day (the treatment takes almost all day because you have to be hooked up to an IV in the hospital). I felt okay during treatment and later that day. I woke up in the night with awful leg pains -- they were so bad I had to sleep in my parents’ bed. The following day was terrible. My stomach felt heavy. When I got up to go to the bathroom door, I threw up all over the hallway. I threw up every few minutes for a couple hours until my hematologist called in Zofran for me. I never want to do IVIG again! It was the worst I’ve ever felt! But then again, it did work. My counts went back up for a short time, but then started to drop. This is when my hematologist and my parents decided to try me on a new medication I would have to take daily called Promacta. It’s now been almost six months since I began Promacta, and beside the fact that I have to watch my calcium intake every morning when I take my medicine, it’s going well. My numbers are finally in the normal range! This means I can play volleyball, swim and all the things I love to do! I think the hardest part about having ITP is that it is so rare that none of my friends really know what it is. When I miss a lot of school (which I hate because I LOVE school!!!!!) I have to explain that I am not technically sick, but this is just part of who I am.

I hope you will consider donating to this awesome cause because it is supporting me too!