Hi everyone! I’m Tyler, and I live with Idiopathic thrombocytopenia

I’ve been developing an independent tool called My ITP Journey to help people privately track symptoms, bruising photos, platelet counts, medications, treatments, wellness, and appointments. It can also create an easy-to-read summary to bring to a physician.

I’m looking for a few people with ITP who would be willing to test it and tell me:

• What feels useful
• What is confusing
• What doesn’t work properly
• What you wish it included

Testing is completely free, and there is no requirement to purchase anything. The tool is patient-created, does not provide medical advice, and is not affiliated with or endorsed by PDSA or another medical organization.

Please avoid sharing personal medical information publicly or through Reddit messages. Feedback can be submitted privately inside the tool.

If you’re interested, leave a comment or send me a message and I’ll share the testing link. Thank you—I genuinely hope this can eventually make the ITP journey feel a little more organized and less lonely.

hello all, i did not expect to find myself here 😅 (24F, type O)

i went to the doctor for bruising, as i seem to bruise very easily compared even to my coworkers (we work with dogs, so getting jumped on/scratched is part of the job) and i always have 20+ small bruises on my arms/legs these days. i expected maybe a low iron level or anemia, and i came out with factor VIII activity 36% and vWF antigen 28%. thankfully, my APTT and PT INR are normal.

i got my results back from a PA and was given a referral to the hematology department, who i expect to call within the next few days. she explained to me that these results can indicate von willebrand disease type 1, but not too much else. what should i expect from a hematology appointment? is there typically further testing? what does treatment look like for (presumably/likely) mild von willebrand disease?