Late to the game, but I just found this thread because of Heidi's name being @'d in a different thread, that I found during my yearly searches for anything new about Factor VIII Disease online. Hello, one-in-a-million people; I'm here too!

Dx'd in early 2008 after a years worth of too many TIAs, multiple head MRIs, and my neurologist finally admitting defeat and saying he was ordering panels of 25 rare blood disease tests to be done and shipped to a center in TX somewhere that did testing at that time. A few weeks later, he called me into his office and said, "Well, I'd read about this during medical school, but I've never met anyone with it in 25 years of practice!" and told me that day I've had it since birth, it explained the TIAs as well as many ER visits which were written off as "just anxiety" because all they did was a EKG. And thank goodness, he also told me what a stroke would feel like, so I'd know to call for help if I was having one, before he referred me to a hematologist. Good thing he did, because about 2 months later, I actually had that stroke & heart attack; two clots -- one to my brain and one to my heart. And my EKG was still wonderful.

I've never met another person with elevated Factor VIII and have had to explain the disease to every single medical professional no matter where I go, and they always hear Factor VIII and automatically think hemophilia. It's so ridiculously frustrating! So now, when I encounter someone my first words are "I have an exceedingly rare hyper coagulation disease that you've never heard of and you'll think it's something completely opposite because of its name". That's how I got all of them to take a beat and listen. I should trademark it. 😉