Cortney's ITP Journey

How long have you been living with ITP?

I have been living with ITP for almost two years, and I am not currently in remission. Right now, I rely on medication to keep my platelet counts stable. I’ve learned that ITP can look very different from person to person, and even from day to day. For me, it has been a journey of learning how to manage the uncertainty while still living my life.

What challenges have you faced, and how have they shaped you?

One of the hardest things I’ve learned is that healing with ITP is not a straight line. There are good days, bad days, great bloodwork, scary bloodwork, and everything in between.

I’ve also learned that my mood and my life don't have to be dictated by my platelet count. When I was first diagnosed, it was easy to let one number determine whether I was going to have a good day or be afraid to do something. Over time, I’ve learned to make decisions based on how I’m actually feeling, what my doctors recommend, and what is happening in front of me—not just one number on a lab report.

I’ve heard that it can take a couple of years for people to really start feeling “normal” again after an ITP diagnosis. For me, that has meant learning how to make decisions without constantly living in fear of what could happen next.

ITP has taught me patience, resilience, and—probably most importantly—how to give myself grace. I’ve had to accept that resting doesn't mean I'm lazy, changing plans doesn't mean I've failed, and needing help doesn't make me weak.

What do you wish you had known at the start?

I wish I had known that ITP can change from day to day, but you cannot put your entire life on hold waiting for it to decide what it's going to do.

There are so many practical things I've learned along the way that I wish someone had told me when I was first diagnosed:

• Ask about standing bloodwork orders. Having standing orders has made it much easier for me to get my labs checked when I need them without having to start the process over every time or call for Doctors appointments.
• Ask whether you can get expedited results. I’m able to get my platelet results within about three hours of having my blood drawn, which gives me peace of mind instead of spending an entire day wondering what my numbers are.
• Keep bruise cream with you. Arnica bruise cream has become my best friend. I take it everywhere!
• Keep track of your “good” veins. I’ve learned which veins are easiest for blood draws, and I’ll sometimes take a picture or make a note so that I can show whoever is drawing my blood. After as many blood draws as I’ve had, I’m trying to avoid unnecessary pokes whenever possible!
• Prepare for bloodwork. I personally try to drink plenty of water the morning of my blood draws, get around eight hours of sleep, and avoid alcohol the night before. I rarely drink now, and when I do, I make sure I’ve discussed it with my care team and know my platelet count is at a safe level for me.
• Don't be afraid to get a second opinion. I have been fortunate to have doctors I trust, but getting another perspective can be incredibly valuable when you're dealing with a complicated or uncommon condition.
• Trust yourself. If something doesn't feel right, don't ignore it. You know your body better than anyone. Rest when you need to rest.
• Stress less! Stress can negatively impact ITP so make sure  you have a routine for staying calm/low stress.
• Ask questions about fertility and reproductive health. If you're a woman who wants kids, talk with your doctors about how ITP, blood disorders, and your medications may affect fertility or pregnancy. I wish I had known to ask these questions earlier.
• Give yourself grace. None of this is your fault. You didn't cause your ITP, and you don't have to be perfect at navigating it.
• Remember that you can do hard things. There were so many moments when I thought, “I don't know how I'm going to get through this.” Somehow, I did.
• Get involved if you're interested. Organizations like the Platelet Disorder Support Association (PDSA) offer opportunities for patients to participate in research and connect with the ITP community. Some research opportunities are compensated, which can be a great way to contribute to a better understanding of ITP while connecting with other patients.

The biggest thing I wish I could tell someone newly diagnosed is: your diagnosis is going to change things, but it doesn't mean your life is over. You are allowed to keep making plans, having fun, working toward your goals, and being yourself.

How has ITP influenced your personal or professional life?

I was working as a teacher when I was diagnosed, and the uncertainty of my first year with ITP made working a traditional school-year job incredibly difficult. I never knew when I might end up in the hospital, how I would feel from one day to the next, or whether I would have the energy to make it through a full day.

Because of that, I ended up maintaining a long-term substitute position rather than committing to a permanent classroom position during my first year. I also chose not to work during the summer so I could give my body time to recover. Later, I worked remotely for a couple of months before returning to a long-term substitute position.

My second year has looked very different. I’m now attending graduate school full-time, and my goal is to return to teaching next year.

ITP has taught me that there is no shame in taking a break or changing your plans when your body needs something different. Sometimes taking a step back is what allows you to eventually take a step forward. I've also become much more intentional about protecting myself professionally. If you're living with a chronic condition, I think it's worth learning about the protections and benefits available through your employer, including things like FMLA and short- and long-term disability coverage, if applicable. I haven't personally been able to establish all of those protections yet, but it's something I plan to prioritize in the future because I want to be prepared if another hospitalization happens.

Ultimately, ITP hasn't taken away my desire to teach—it has made me appreciate why I want to teach even more. I miss being in the classroom and working with kids, and I'm excited to return when my body and health allow me to do so.

My biggest lesson has been that you can build a meaningful life around ITP. It might not look exactly like the life you originally planned, and that's okay. Give yourself breaks. Give yourself grace. Keep moving forward.

I Thought I Was in the Best Shape of My Life. Then ITP Changed Everything.

I started running the Turkey Trot in 2024 thinking it would be another Thanksgiving tradition. Instead, I ended up having to walk it.That was strange because I was in the best shape I had been in since high school. I loved fitness, cheerleading, teaching, and staying busy. I was used to pushing my body, not wondering why it suddenly wasn't cooperating with me. I finished the Turkey Trot, went home to watch the Lions game, and celebrated Thanksgiving with my family. By the end of the night, I looked at my parents and told them, “Something isn't right. I need to go to the hospital.” At the hospital, I was diagnosed with a bad bladder infection. I was given fluids and medication and told to follow up with my doctor for routine bloodwork. There was no indication at the time that anything was wrong with my platelets.

A couple of weeks later, everything changed.

I went to work, came home, took a nap, and then went to cheerleading practice. I felt terrible—exhausted, achy, and just completely off—but I went anyway because I was used to pushing through. While spotting an athlete during tumbling, she accidentally hit my ear with her earring. My ear started bleeding. And it wouldn't stop. I went into the bathroom and spent 15–20 minutes trying to get the bleeding under control. I didn't think much of it. I went home after practice and immediately went to sleep. The next morning, I woke up to three missed calls and a voicemail from my doctor's office. They told me my bloodwork was normal—except for one number. My platelet count was 23,000. I was told that if I started bleeding, developed bruising, or noticed petechiae, I needed to go to the hospital immediately. My mom checked me for bruises. We didn't see anything obvious, so I went to work. Three hours into teaching, I developed a massive nosebleed. I never get nosebleeds. I left work and went straight to my doctor's office. My doctor took one look at the situation and told me to go directly to the hospital. He told me that with platelets that low, something as simple as a serious fall or car accident could become life-threatening because my body wasn't able to clot normally. I went home, packed a bag, and my parents drove me to the hospital. I was admitted immediately. That was the beginning of my ITP journey. I was started on steroids, and over the next five days, my platelets slowly climbed to 55,000. It was still below normal, but my hematologist and oncologist were encouraged by the upward trend, so I was discharged on December 16.I thought I was going home to recover. I thought the worst was behind me. I was wrong.

Four days later, I felt incredibly sick and was in significant pain. I tried going for a walk, thinking maybe moving around would help. Instead, I felt worse. During my blood draw, I became so exhausted that I actually passed out. My platelet count had fallen to 3,000. I was sent straight back to the ER. By the time I was admitted, my platelets had dropped so low that the machine couldn't even report a number. 0. I became the youngest person—and, jokingly, the “lowest platelet count”—on my floor. I was started on IVIG, high-dose steroids, and pain medication. I underwent scan after scan, ultrasound after ultrasound, and what felt like 10,000 blood draws. One of the biggest fears was whether I could have bleeding in my brain. It was terrifying. And yet, every test kept coming back normal. My brain CT was clear. My abdominal CT was clear. My kidney, bladder, gallbladder, pancreas, liver, and spleen ultrasounds were normal. My other testing was reassuring. We ruled out infections and other potential causes. Praise the Lord. But there was still one enormous question: Why was this happening?

I was discharged on December 23, just in time for Christmas. I was so excited to be home with my family. Instead, I spent Christmas Eve and Christmas feeling incredibly sick. I developed a terrible headache, severe pain, nausea, and so much weakness that by the end of Christmas night, I could barely talk or walk. We went back to the hospital. I received treatment for the severe headache and side effects from IVIG and eventually went home around 3 a.m. Then my next blood test showed my platelets had fallen to 20,000.

That was when my hometown doctors referred me to the University of Michigan. We left around 5 a.m. and headed to U of M. Within hours, I was admitted, and infectious disease and hematology teams began working together to figure out what was actually happening inside my body. Within about 48 hours, we finally had an answer. My body had been struggling to clear cytomegalovirus, or CMV, a virus in the same family as mononucleosis. In my case, my doctors believed the infection was connected to the development of my ITP. After weeks of wondering what was wrong with me, we finally had a piece of the puzzle. I spent New Year's Eve and New Year's Day in the hospital.  That was not exactly how I imagined starting 2025.

I left U of M on high-dose steroids with a long-term treatment plan and became a regular patient with their hematology team. For months, my life revolved around weekly blood draws, medications, appointments, and watching a number on a lab report determine what I could and couldn't do. I even got a bone marrow biopsy to ensure there was 0% chance of cancer- that was a huge fear of mine during this whole journey.

I eventually started Nplate and later transitioned to Promacta. In April 2025, I was able to come off steroids. For the first time, I felt like maybe I was getting my life back. But ITP doesn't always follow a straight line.

In November 2025, we tried to taper me off Promacta. My platelets dropped below 60,000. I also developed extreme inflammation in my face that landed me back in the hospital for another four days. We had to increase my treatment again, and my platelet counts remained below normal for months. By March 2026, the fatigue had become one of my biggest struggles. I was sleeping constantly. I had very little energy. I was getting sick frequently. I wasn't living the way I wanted to live. We added a low dose of Prednisone back into my treatment plan, and for me, it made a huge difference in my quality of life.

Now, in August 2026, my platelet counts have finally reached the 200,000s. That number might not mean much to most people. To me, it feels enormous.It represents almost two years of uncertainty, hospital rooms, needles, medications, specialists, setbacks, tears, prayers, and learning how to be patient with a body that I cannot control.We're now beginning to taper me off Prednisone and eventually hope to slowly taper me off Promacta as well. I'll continue having regular bloodwork so we can make sure my platelets remain stable throughout the process. I don't know exactly what the next chapter will look like.

But I know this: I am not the same person who ran that Turkey Trot.

Before ITP, I thought being healthy meant being strong enough to push through anything. Now I understand that strength can look completely different. Sometimes strength is going to the hospital. Sometimes it's asking for help. Sometimes it's cancelling plans, resting, and letting your body heal. Sometimes it's sitting in a hospital room filled with your loved ones. Sometimes it’s exploring your home town or different cities in your state because not every beautiful thing happens when you travel far. Sometimes it's trusting your doctors when you don't have answers. And sometimes it's simply waking up the next day and trying again.

ITP has changed the way I see my health, my career, my relationships, and my future. It forced me to slow down and appreciate things I used to take for granted—teaching my students, coaching cheer, spending time with my family and friends, being active, and even just having enough energy to get through an ordinary day.

It also taught me that you can be scared and hopeful at the same time. You can have a terrible day and still find something to laugh about. You can be exhausted and still be grateful. Your faith can be bigger than your fear. And you can have a diagnosis without allowing that diagnosis to become your entire identity.

When I was first diagnosed, I had never even heard of ITP. I didn't know what a platelet was. I didn't know what my numbers meant. I didn't know how many treatments there were or how long this journey could last. Most importantly, I didn't know anyone else going through it. That's why I share my story. Because somewhere, there is another person hearing the words “You have ITP” for the first time and feeling exactly as terrified and confused as I was. If sharing the messy, scary, funny, frustrating, and hopeful parts of my journey can make even one person feel less alone, then every hospital stay and every difficult conversation becomes part of something bigger. I don't know what my next chapter with ITP will be. But I'm here. I'm still teaching. I’m still learning.  I'm still laughing. I'm still making memories. And I'm still me. ITP is part of my story—but it isn't the whole story.