John's Story
Living with Immune Thrombocytopenia
John was just 17 when unexplained bruising and a dangerously low platelet count led to an ITP diagnosis. While his peers prepared for college, John was managing intense treatments, debilitating side effects, and the isolation of living with a rare disease. With support from his family, a dedicated teacher, and the Platelet Disorder Support Association (PDSA), he found strength and community. Through his hardships, John channels his experience into advocacy, organizing blood drives, leading support groups, and ensuring that patient voices are heard in shaping the future of ITP care.
John was just 17 when he was diagnosed with immune thrombocytopenia (ITP), a rare autoimmune disorder. A high school wrestler in California, he first noticed unexplained bruising and red spots on his skin. A routine blood test revealed his platelet count had plummeted to just 7,000—alarmingly low compared to the normal range of 150,000 to 450,000. He was rushed to the ER, and after intervention, John presented with meningitis-like symptoms and unbearable pain.
At a time when most teens were preparing for college, John was navigating a complex and isolating illness. He credits his Spanish teacher, a fellow ITP patient in remission, for helping him through.
It was definitely rough. I was taking honors classes, and I had to miss entire days of school for treatment and then the next day to recover.
John and his mother found the Platelet Disorder Support Association (PDSA), which became a turning point. At a conference, he met others who understood what he was going through.
ITP is an invisible illness. You look fine, but you feel awful—like a shadow of yourself.
In college, John’s fatigue worsened. He often slept in his car between classes and avoided treatment. Attempts to use disability services were met with misunderstanding and stigma, leading him to refuse the medical support for classes that he was qualified to receive. Instead, John chose to hide his condition, pushing through college untreated unless absolutely necessary. The emotional toll was immense.
I looked normal, but I felt empty in every way. I couldn’t tell any of my classmates about it because they were all 19- and 20-year-olds – healthy, fine, and living life.
At 21, after a summer of critical platelet counts, he underwent a splenectomy—his last resort. It worked, and he remained in remission for five years. Unfortunately for John, his symptoms returned.
Now a business owner, he remains active in the ITP community by organizing blood drives, leading support groups, and advocating for patient-centered care. He even spoke at an Externally Led Patient-Focused Drug Development (EL-PFDD) meeting with the FDA to elucidate the patient experience and help shape future research priorities.
Researchers need to hear from people living with ITP. It’s not just about the science. It’s about our lives, our independence, and our ability to live without constant stress.
Support and Resources
Living with Immune Thrombocytopenia (ITP) can be challenging, but you are not alone. There are organizations, support groups, and trusted resources that can help you better understand your condition, connect with others, and find the support you need.
