Steve's Story

John was just 17 when he was diagnosed with immune thrombocytopenia, 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 a dangerously low platelet count of 7,000. He was rushed to the ER, where he received an overwhelming treatment of seven bottles of IVIG, far beyond the recommended dose, which led to meningitis-like symptoms and unbearable pain.

“They dumped seven bottles of IVIG into me. I didn’t know I could experience that level of pain.”

He was also prescribed high-dose prednisone, which caused severe side effects. 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 still taking honors classes, but I had to take an entire day for IVIG treatments and the next day off just throwing up and recovering.

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 like death.”

In college, John’s fatigue worsened. He often slept in his car between classes and avoided treatment due to side effects and inconsistent results. At 21, after a summer of critical platelet counts, he underwent a splenectomy, his last resort. It worked, and he remained in remission from 2018 to 2023.

But when symptoms returned, John faced delays in care and dismissal from a hematologist who ignored his history. Now a business owner, he remains active in the ITP community by organizing blood drives, leading support groups, and advocating for patient-centered care.

Companies need to hear from people living with ITP. It’s not just about the science. It’s about how treatments affect our lives, our independence, and our ability to live without constant stress.