my florio ITP

I have been using this app for a period of time and have found it useful to track my platelets, incidences of fatigue, bleeding episodes or bruising. I use it when I speak to my care team.

The concept of an ITP app is a much needed one for those of us with this condition, juggling lab visits, up and down platelet counts, a changing variety of medications, diets- trying to make sense of it all. After trying to write down everything in a journal, I was excited to hear there was a specialized app. This app, however, does not live up to expectations. It strikes me more as a data collector for doctors, pharma, which isn’t a bad thing. It’s just not so tuned in from a patient point of view, so I probably won’t continue using. Thus not so useful for collecting data either. Thirty + minutes of entering in platelet counts going back three years ( looking for possible cause) was especially tedious for anything more than a year ago (where is the separate year dial?). Medications entry was a bit easier though the start and stop prompts were confusing (is it referring to a single infusion day, or 1st and last over months with stops and starts and other medications in between?). I assured myself it would be worthwhile in the end, but was surprised to find just a chronological list starting with todays date (where are the graphs,colors, a filter and sort function?) There is no place to enter diet or supplements, or acupuncture, yoga or other healing practices, sleep, which all seem major omissions. No place to enter medication side effects ( I’ve had a couple weird extreme side effects that I still don’t know what happened, or what caused it, doctors not a clue). No place to add side notes or edits on a day without having to delete the day. How about a notes section to jot down ideas to further explore more, list of favorable and less favorable food/drink, questions for the doctor visits, etc? This is a very basic app that is not any more useful than notes in a calendar and my online Kaiser lab results. We are all looking for some cause and effect in the seemingly random roller coaster ride that is ITP. Where’s the AI to make sense of all our various data? At least help us sort it better. In the meantime, I’ll be going back to my original paper journal.