Life With a Rare Condition: Living With ITP

Medically Reviewed by Neha Pathak, MD on February 26, 2026

By Kristy Coleman, as told to Evan Starkman

In 2019, I was driving to the Sacramento airport when I received a call from my doctor's office. "You have to get to a hospital right away," the woman from the office said. Routine blood tests had found my platelets were critically low – they were "at a two," she said. And I was like, "I'm not going to a hospital – I'm going to Vegas!" I felt OK, and I didn't understand the severity of it. But she quickly convinced me that my health situation was severe enough to cancel my trip.

At the hospital, I learned that I had chronic immune thrombocytopenia (ITP). They started me on treatment right away, and I stayed in the hospital for about a week until I was able to stabilize. They released me on my 35th birthday, which was a plus, but the diagnosis left me in shock. 

 

At the time, I worked for a very small company as a project manager. I'd been with the company for 15 years. Suddenly, I needed to find time for things like routine blood tests and occasional, unexpected trips to the hospital.

I'd do my bloodwork in the morning at 6, and then I'd commute to work. By the time I got to work, my blood results would come back, and sometimes the doctor's office would say, "Time to go to the hospital." So, it was really difficult just trying to navigate the work-life balance.

I was fortunate. The people I worked for were very flexible with my schedule. They allowed me to work from home when I needed to. And I was very fortunate to have a boss who was understanding. Once, I got a two-hour bloody nose at work, and he was like, "We're taking you to the hospital."

There were a couple of people at work who really struggled to grasp the severity of my illness because I would show up to work. I would still do my job. But then, maybe the next day, I'd be in the hospital, and they'd say: "Well, she looked fine yesterday. What happened?"

We have all these symptoms and side effects that people can't see. So, I think it's important just to help educate people, not just on ITP, but any invisible illnesses that are out there. As part of my efforts to do that, I write an online column about dealing with the many challenges that ITP can throw your way.

Early on, I was really depressed that I had ITP. I thought my life was over. Getting therapy was huge for me. I saw my therapist for years, and she helped me find a way to navigate and accept what my life now is. Therapy helped me so much in understanding ITP and understanding my feelings and emotions, and how I could better handle them. It got me to reach radical acceptance, in a way.

The fatigue that comes with ITP can be hard to accept. You want to do things. You want to make plans. And then the day comes and you just don't have the energy for it, or you're not feeling well. I started to accept that I may have to cancel plans. I may have to say "no" more often. I learned to let myself sleep if I was tired. 

The majority of my friends understood. And my family is super supportive, so if I was under the weather, it was OK. There were certain events I would push myself to attend, but I gave myself time limits. For example, if I had to go to a birthday party, I'd go for two hours and know that was my max before I'd become exhausted.

I went through about six different hematologists before I landed the one I have now. Most of them treated me the same, which was with steroids and then intravenous immunoglobulin (IVIG) treatment.

I had all the side effects from steroids: the moon face, the joint pain, sleepless nights, and then too much energy. I love the fact that the steroids did what they needed to do for my body to get my platelets up, but the side effects were just so harsh. It took a big toll. It was a lot on my husband, because I wasn't able to do a lot of things. So, he had to pick up tasks around the house and make sure that I was healthy.

My current hematologist was the one who told me there were more treatment options out there for ITP. I was able to try three different medications for ITP, and one of them worked really well for me. It got my platelets up. I had some bad side effects from it, although not everyone else will. Everyone reacts to the various forms of treatment differently.

Right now, I'm not taking medication for ITP. My hematologist has me get bloodwork done once a week, so we can monitor my platelet levels closely. It's a strategy called watchful waiting. I'm doing OK. If in over a year's time I don't have any problems, I'll be considered in remission. I've been in remission before, and you can fall out of it any time. But you don't have to worry as much when you're in remission.

When you're living with chronic ITP, it's helpful to be surrounded by people who are going through the same thing that you are. Years ago, I joined a local support group through the PDSA (Platelet Disorder Support Association), and eventually I led the group.

For the most part, it was us sharing our stories of our diagnosis, experiences with different treatment plans, how they lived a "normal" life, and other shared experiences. It was a great way to connect with people who understood the illness or were newly diagnosed and trying to navigate this disorder. I would help lead the conversations, try to keep the topics aligned, and give everyone a fair amount of time to speak. It was nice having that community. I unfortunately lost my husband in 2023 and stepped down from leading the support group after that.

Social media has also played a big part in building my ITP community. I found a whole community of people who have ITP on Instagram, and I became friends with them. It just solidified that life isn't over. I can live with this.

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