My name is Tierney, I am 23 years old, and I have had severe chronic immune thrombocytopenia for 17 years. Thanks to my parents, sisters, and medical care teams; here is my story:

In the winter of 2007, when I was five years old, I went outside for recess after just recovering from the flu. I came back inside with a bunch of little red dots on my arms and bruising on my abdomen. When my mom picked me up, I told her I had chicken pox. She saw petechiae covering my arms and legs, and she immediately took me to the hospital. They drew 10 vials of blood and ran multiple tests, including a bone marrow biopsy. I was diagnosed with chronic ITP in February of 2008 by my wonderful pediatric hematologist. I never received the acute diagnosis. There wasn’t as much research as there is now, so it took a little trial and error. I didn't go to school for the following two weeks so we could make plans for the next steps. I received chemotherapy for four weeks, IV corticosteroids, Prednisone for two weeks, and Rituximab. I even tried hyperbaric oxygen therapy. After all this, we finally settled on IV immunoglobulin treatments. I received IVIG every 4-10 weeks from the ages of 6 to 16, and now I take Eltrombopag once daily.

I remember having to grow up very quickly, and having to learn a lot in a very short amount of time of what my new normal was. It was really scary in the beginning, but we did as much as we could to work with what we had. I was no longer able to participate in outside recess or gym class, which lasted until the 2nd grade. I couldn't ride the school bus to field trips. No medications. No sports. I was having my blood drawn every 1-3 weeks and being pulled out of school for treatments or appointments. I remember being mad and frustrated because I wanted to be normal. I wanted to go outside and be with my friends. It was a really hard concept for me to understand so young, especially because it changed so often. But slowly, we started to figure it out.

My platelet counts were always extremely low, the lowest being 2,000 per microliter of blood. I was often exhausted, and every light bump led to instant blue and black bruising. I had a few nose bleeds that refused to stop which landed me in the ER. I once fell off my bike and spent the night in the ER. I also hit my head on a tile floor and had to go in for a bunch of tests and scans. Even flossing or brushing too hard led to bleeding. But I’m still here, and it never stopped me or slowed me down. ITP has made me persistent and sure of myself in ways most people don’t get to experience. We became more aware of surroundings and planned activities that I could do.

Though there were challenges, I had a lot of fun as well. All the time I spent away from gym and recess allowed me to spend time reading books. I joined local and school swim teams to participate in non-contact sports, as well as took interest in arts and music. I did show choir, musicals, and marching band. These activities helped me establish a sense of normalcy. Each year, I met with my teachers and school board members for my care plan, which they always supported wholeheartedly. At home, I was able to play outside, go camping, and run around with my sisters. I didn't let it hold me back. I ended up graduating both high school and college with honors. My ITP became a part of me rather than a hindrance. My pediatric hematologist often used me as an anonymous example for new ITP families to let them know it was okay to let us be normal kids. It was actually good to let us be normal kids.

I’ve had my fair share of interesting experiences as an ITP patient. I was once interviewed by the University of Wisconsin Madison hematology students so they could learn more about children and families living with ITP. I have loved my care teams and made great connections with hematologists, nurses, and many other medical professionals. I always have people on my side rooting for me. We all made the best out of what could've been the worst.

It’s a lot. It is something I think about every day and it impacts many decisions I make. It impacts my mental health and my ability to treat other conditions within my body. But it’s just part of me as a person, and I wouldn’t change that about myself. Someone who doesn’t know me would never guess that I have it. However, it can be challenging having an invisible illness. I’m often exhausted and get frequent headaches. But I do everything I want to do, and many more things I don’t want to do. I just live life the way I want to and do the things that make me happy, and I’m doing pretty well.

I currently work as a Costume Technician making costumes for Broadway, national tours, UK theatre, television, and even helping with artist commissions.

My advice for any new or long time ITP patients and families is to just live your lives. Let the scary stuff be scary, but don’t let it take up all your space. Find what treatments work for you. Find what other lifestyle or medical changes improve your quality of life. Don’t let the fear of the future keep you from the present moments. You will cross some bridges when you get to them and that is absolutely fine. Don’t be afraid to stand up for yourself. I have solved so many symptoms and issues by demanding space be held for me. Be stubborn. Be persistent. Make people listen to you. It helped me. It’s okay to be scared too. Being brave all the time is really hard, but it is worth it. Don’t forget to be kind, especially when you’re scared and angry.

Advice for just the ITP patients: You don’t have to follow all the rules either. I occasionally drink wine, coffee, and Coca-Cola. I eat tomatoes, berries, and fried foods. I like chasing my nephews around and going to the gym. I work with needles and razor sharp scissors every day. I have a whole lot of tattoos and piercings. Just find what works for you, because you know yourself and your ITP better than anyone ever will. Don’t let anyone make you feel fragile.

Interested in sharing your journey with ITP? Submit your ITP story here. (Full names and contact information will not be shared).