I have factor vlll but I must be low because my hematologist felt I did not need medication. I didn't realize it was that rare?

I was just diagnosed with factor 8 today I’m devastated

also from what I found it doesn’t look like it’s as rare as we may think this article says it’s found in 11% of the adult population

I think at one time, they did think it was one in a million. That's what I was told when I was diagnosed 20 years ago. Hopefully, they had more current information now but my understanding is that it is still considered rare.

See my blood test results
High factor 8 at 261 %
(That test comes even after being on blood thinners for 3 months which for me is concerning. See the doc again in a couple months.)
V factor negative
DVT has brought this diagnoses to me since there is no explanation as to why the DVT

Heidi, I have HIGH factor VIII and HIGH von willebrand. These are new diagnoses for me after having had DVTs and PEs earlier this year. How are you? I know how you feel with this rare condition, limited resources and the anxiety about how to best handle this in the midst of COVID. I am also on Eliquis 5 mg x 2 per day.
Hugs,
Sudie

Hi Heidi. It is now 2023, so unsure if you still visit this page, but I too have had two blood clots and have elevated Factor 8. I was wondering if you found any good articles regarding this clotting disorder.
Thank you, Chari