It is a challenge. Two generations of women before me, then me, then two generations after me have hemophilia B and severe bleeding histories. I now strugfle to get a perscription for factor. By the time I am seriously bleeding, the doctors watch and if lucky, I will get blood products.
I have great concern for the accuracy of testing Of factor levels and lab work.
It is very difficult to get an order for factor, even though, the male family members can get treatment. We also are fully trusted with our male relatives, but heavily structured and investigated to make sure we are telling the truth.
Thank you for asking!