Petechiae in von Willebrand's

[btdyq5]

Hi all,

This is my first post in this community. Following an approximately 8 month (and counting) history of recurrent petechiae, my doctor finally referred me to a hematologist for further evaluation. The hematologist listened to my concerns and told me that she wanted to test me for von Willebrand disease, but she expected the testing to come back negative as I "should have other symptoms besides petechiae if it's von Willebrand's." I was kind of surprised by that, as I had been under the impression that vWD presented with a spectrum of symptoms of varying severity, ranging from asymptomatic to very serious. But I'm no doctor. Anyway, the test results came back consistent with Type 1 vWD. My hematologist was very surprised and said she wants me to be re-tested in case there was a lab error. Seems unlikely to me that abnormal PFA-100 collagen ADP closure time, VW antigen, VW RCo, and Factor VIII could all be attributable to lab error, but who knows.

My 2 questions for anyone knowledgeable on the subject are as follows:

1) Can type 1 von Willebrand's present with only petechiae? I really have no other bleeding symptoms. I cut myself shaving and incur little scrapes and scratches on a pretty regular basis with no prolonged bleeding and I can count on 1 hand the number of nosebleeds I've had in my life (none since 2011). If VWD can't explain this, are there any other conditions that would cause lab abnormalities that mimic type 1 VWD with petechiae as the only symptom?

2) How likely is it that a person could have regular, hereditary type 1 vWD without symptoms for 30 years, only to become symptomatic at age 31? I'm very worried I have the 'acquired' type of vWD that is secondary to some pretty terrible things and I was just wondering if there was any chance my condition could be hereditary still?

Thanks in advance for your help!

[mbenarro]

Hey!  I'm not sure but if I'm 32 and they suspect I have von willebrand as well.  I had a weird large bruise crop up on my back that I went to the doctor for.  She 'humoured me' by doing some blood work and I had a very low ristocetin factor (13 instead of the 30-50 range).  Now I have a few blood spots in my mouth and I have had some excessive mouth bleeding after dental work recently that I just brushed off as not important.  Prior to this point I really couldn't pinpoint much that I would call a symptom.  I have no idea if I have an acquired version or what but no one in my family is aware of any problems.  If I've had it all along, like you, mine has suddenly worsened and become noticeable.