How ITP Taught Me That My Voice Matters: My Journey from Silence to Advocacy
Told from the perspective of John living with immune thrombocytopenia since age 17.
I first noticed the bruises while rushing between high school classes. They covered my arms, but I couldn't explain them. I also felt an overwhelming fatigue that no amount of sleep could cure. On March 26, 2014—a date that's etched in my memory—I was diagnosed with immune thrombocytopenia (ITP). I never could have imagined that a disease I'd never heard of would teach me so much about what it means to be alive.
ITP is a rare autoimmune condition that causes the body to mistakenly attack and destroy its own platelets, which are essential for blood clotting.1 For me, this meant my platelet counts would swing dramatically from critical lows of 5,000-7,000 to barely manageable levels of 30,000-50,000. For reference, normal platelet counts typically range from 150,000 to 400,000.1
The physical symptoms—bruising, petechiae (tiny red spots from broken blood vessels), and constant risk of bleeding—were challenging enough,1 but I was completely unprepared for how profoundly ITP would impact my daily life. The fatigue was astounding.
In college, I found myself sleeping in my car between classes because I couldn't make it home. Some days, I couldn't get out of bed, attend classes, or complete assignments. I ended up failing some classes, not because I wasn't capable, but because my ITP didn’t allow me to function like a “normal” college student.
Fatigue is a common symptom for people living with ITP. I learned that in a recent real-world survey 73% reported general fatigue as their most common symptom, with 68% of struggling specifically with physical fatigue. The study also found that 58% of participants struggled with overall energy levels. These symptoms in isolation or combination can create significant barriers to daily living.3
John’s wife, John, and John’s mother
Navigating Treatment and Isolation
My journey through multiple treatments felt like an endless cycle of hope and disappointment. Some treatments came with challenges and side effects,2 and as I continued to struggle with my daily quality of life, I decided to go off treatments despite my persistently low platelet counts.
I initially chose to keep my ITP experience private but soon realized that sharing with friends, family, and even some healthcare providers was essential not just for my safety but also to raise awareness.
For years I lived knowing a simple bump or fall could lead to serious bleeding.1 The summer of 2021 was particularly brutal—I spent the entire season in bed with critically low platelet counts. Ultimately, my doctors and I made the decision to have my spleen removed, a procedure that raised my platelet counts and brought me into remission for several years.
Turning Challenge Into Purpose
Two years ago, that familiar darkness crept back in as my platelet counts dropped back to dangerously low levels. I didn't want to lose the life I had rebuilt. But I've learned that having something to look forward to makes all the difference—and for me, that was advocacy.
With my mother's help, I turned the challenges of ITP into something positive. I became actively involved with patient organizations, facilitating support groups and connecting with others living with this condition. When you've been at rock bottom, you understand what it means to lift others up.
With this knowledge, I wanted to ensure that the patient voice is heard throughout research and development. Speaking with clinical researchers and scientists gives me hope for the future and a better understanding of how to advocate for myself and others.
Looking Forward With Hope
Today, I'm married to an incredible woman who has supported me through my ITP journey, and I am stable.1 Most importantly, I've learned that while I have ITP, it doesn't have me. It's only a chapter of my story.
My message to others living with ITP is simple: Don't let this condition define you. Speak up about your needs, and don't be afraid to bring a loved one to your doctor visits. Your appointments should be discussions, not one-sided conversations.
This sentiment is also expressed by the ITP community. In the survey I mentioned, 68% of participants said they want to be even more involved in shared decision-making with their healthcare teams.3 I’m encouraged by the meaningful research underway to better understand and manage ITP, and it’s my hope that future patients will experience less burden and greater freedom.
Each patient’s story reflects their own experiences with ITP, which may vary. Please consult your doctor if you have any questions about your health or treatment. This patient was compensated for their time.
References
- Platelet Disorder Support Association (PDSA). ITP in Adults. Accessed October 14, 2025. https://pdsa.org/images/stories/pdf/ITP-in-Adults-FAQ.pdf
- Platelet Disorder Support Association (PDSA). The Science Behind the Causes of ITP. Accessed October 14, 2025. https://pdsa.org/images/ScienceBehindCauses.pdf
- Cooper N, Kruse C, Deneen Morgan S, Laurent J, Arvelo-Saillant M, Roussy J-P, et al. Patient survey in immune thrombocytopenia (ITP): Identifying unmet needs related to treatment and disease control in patients living in the United States. BJHaem. 2025;207(3):1038-1046. doi:10.1111/bjh.20257
- Platelet Disorder Support Association (PDSA). For Adults with ITP. Accessed October 14, 2025. https://pdsa.org/images/AdultTreatmentGrid.pdf.