I’m a new member, having only asked my first question/created my first topic about 2 weeks ago. I was very impressed by all the very informative responses from forum members and I was hoping I might ask a few other questions:
Is there anyone out there with VWD that has petechiae as their only real symptom? I’ve had petechiae for going on 7 months now, which is what led to VWD testing and lab values consistent with type 1 VWD, but my hematologist is adamant that if I truly had VWD there would be other symptoms like prolonged bleeding. I cut myself shaving on a near-daily basis (oops) and I lead a very active lifestyle that leads to a lot of minor cuts and scrapes, and I have never ever had any prolonged bleeding from any cuts/wounds, with the exception of feeling surprised by how long it took to stop bleeding after having an impacted wisdom tooth removed several years ago. It took 2-3 days to stop oozing, but healed on its own without issue or need for blood transfusions or anything else. Would it make sense that a person with VWD could have petechiae but no actual real bleeding tendencies, despite daily “opportunities” to have prolonged bleeding?
Is there any information on frequency of lab error in VWD testing? My hematologist has speculated that there may have been lab error leading to my low levels of VWD antigen, RCo, Factor VIII, and prolonged collagen ADP closure on the PFA-100. I’m no expert, but that seems really odd that abnormal results on ALL of those would be due to error…