I was diagnosed with ITP at 16 months old, with a count of 8,000. I am now 33, so going on 31 years of my ITP journey. I’m now considered in recovery with counts near 200,000. My history with this autoimmune disorder is long.
When I was first diagnosed, I was covered in bruises and petechiae and at the suggestion of a family member, my parents took me to the doctor to see what was going on. I had a bone marrow biopsy to rule out leukemia, and after my platelets didn’t rise after six months, the diagnosis was later changed to chronic ITP.
My treatments were steroids and IVIG from age 16 months to 11 years old. I had a treatment every four to five weeks and treatments only raised my counts into the 50s. At 11, treatments changed to Anti-RhoGAM slow IV push. This did not raise my counts for long either, but the nice part was that it was a 60-minute IV push instead of a 16-hour hospital stay IVIG treatment. It was tough being in a wheelchair at school with an IV in my foot for those longer treatments. I also had a para-aide at school to keep me from getting into harmful and unsafe situations such as crowded hallways and busy classroom activities and recess. I wore a helmet and knee pads on the playground and bus to prevent injuries as well. It was a humiliating experience. My aide was also responsible for flushing my IVs and handling excessive random nosebleeds.