Two weeks later, and a week before our wedding, I was in her office learning of my results and that I had a disorder called "Factor V Leiden" (pronounced: factor 5 li-den). Essentially this is a blood clotting disorder that predisposes me to blood clots. But not only do I have Factor V Leiden, I am homozygous for it. That means I'm at a higher risk for blood clots than those who are heterozygous and those who don't have Factor V at all. I am part of less than 1% of the world that is homozygous for this disorder. My life is no longer like others; it's changed, but it is manageable. I will be on blood thinners for the rest of my life. This is not something that I am excited about, but it was a carefully thought out decision that Casey and I made.
So what exactly is Factor V Leiden? Well, that's a good question. There is lots of info out there, you can certainly Google it. But sometimes it's difficult to find info that is in terms one can understand (unless you are in the medical field). I have found a few examples that might help explain.
1st link: http://www.ruh.nhs.uk/gps/pathology/documents/thrombophilias/Factor_V_Leiden_info_sheet.pdf
2nd: From http://www.oumedicine.com/body.cfm?id=2859 "The factor V Leiden (R506Q) mutation accounts for 95% of the cases of activated protein C (aPC) resistance. It is found in 1 to 5% of the normal population and in 30-60% of patients with deep vein thrombosis (DVT). Heterozygotes for the mutation have a 5- to 10-fold increased risk for thrombosis or 15% lifetime risk for DVT. Homozygotes have a 50- to 100-fold risk for thrombosis or 80% lifetime risk for DVT."
Remember, I am homozygous. So, yeah, I hope you have a better understanding. I am always open to discussing it. It's not something that is well known; however, I am beginning to know or get in touch with more people who have it (especially through Facebook). Thanks for reading!
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