Hi everyone,

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:

  1. 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?

  2. 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…

I have been developing petechia sense I was 13 now 23. I get it on my upper thighs and breast. And I was diagnosed with type 2N because of it at 21. And now, two years later, all my blood work came back normal for vwf and factor 8. So my new hematologist says I don’t have VWD after two others said I did. I suggest getting factor 8 checks and platelets. I am no doctor but factor 8 was checked right away still working on getting my platelets checked now.

I sorry I am no expert. See my post. I am new, because I suspect that my darling daughter of 13 has VWB. And when I saw your heading I realised that I think my daughter has had petichaie in this year. I would also like to get her tested but the gp’s are sending on other avenues etc. She had some other symptoms too. We also never in 13 years had VWB on the radar. Never even heard of it. But I think a wisdom tooth bleeding 3 days is really long. I am even suspecting my ds (darling son) of 6 years might have had petichiae. He once had this thing on his face. Must check if I still have a pic of it. It looked like a small red star on his left cheek. It took very long to disappear and I was very worried and perplexed about is. This happened long before his sister had all her weird symptoms.
I feel like just going to a haematologist straight. Is that the correct professional for VWB? May I ask what blood type you are? Apparently blood type has some factor to play in VWB.