I have had ITP for close to 49 years. When I was 12, I had gone swimming one summer day.
The next morning, I woke up with "spots" all over my body. My mom had a doctor's appointment that day and took me along. The doctor had blood drawn, and the next morning called our house and told my mom to get me to the hospital immediately – My platelet count was 9. I spent 4 days in the hospital being observed while my platelet count came up on its own with no treatment. At that time, I was one of 5 known cases in our state, and we were told the ITP would never occur again.
Twenty-eight years later, I had the tell-tale signs of low platelets while we were out of state visiting friends. I went to the emergency room, where labs confirmed a platelet count of 8. I was given a steroid IV and that was it. I saw my hematologist when we got home, and all was fine until 9 years later when I woke up to find that I was covered from head-to-toe in the purple "spots" again. After another trip to the emergency room to check my platelet count, I was told that I was at 0, then sent to a larger hospital an hour from home and admitted. Immediately, they put in a PICC line and did a bone marrow biopsy, followed by IVIg and Prednisone. I had 5 doses of IVIg and showed no improvement, so Rituxan was given on day 6. After several more days of no improvement, I finally was dismissed on day 10 with a count of 29. Three days later, at my second Rituxan infusion, my count had risen to 159!
All was good until I had a relapse 18 months later, followed by another relapse 2 ½ years after that. The past three Decembers have been spent battling my ITP for around 6 months each time. The worst was this past December 2023 when I ended up in the hospital for 3 weeks, being treated by about every medication they could treat me with and followed by issues caused by the RhoGam (which caused anemia and I needed a blood transfusion).
Currently, my platelet count is too high, which can happen with some of the medications. My hematologist doesn't know if my platelet count will drop again, but the odds of that are high. In the meantime, I go on with my life, taking time for my family and doing the things I enjoy. After 48 years, I am proof that a person can live with ITP.