May 3, 2013
Me And Factor V Leiden
I recently learned that I have a genetic blood disorder called Factor V Leiden (pronounced FAK-tur five LIDE-n). And like with any medical diagnosis, I am more than a little scared about it. No, it is not cancer, nor HIV/AIDS, nor any other immediately frightening disease, but it can be dangerous, and that is scary. So, like any good writer/researcher, I immediately set to learning more about it. Since I had never heard about such a disorder, I thought maybe redOrbit’s readers might want to learn about Factor V Leiden. This is a blog that serves to help me and help you.
Okay, so first things first, what exactly is Factor V Leiden? Well, the America Heart Association Journal explains “People with factor V Leiden have a mutation in the gene for factor V. Factor V Leiden is an abnormal version of factor V that is resistant to the action of APC. Thus, APC cannot easily stop factor V Leiden from making more fibrin. Once the coagulation process is turned on in people with factor V Leiden, it turns off more slowly than in people with normal factor V. Having factor V Leiden, therefore, results in a condition known as APC resistance.”
And just what does that mean, you ask? Basically, Factor V Leiden is a genetic disorder caused by a mutation of one of the clotting factors called Factor V, which means that people with Factor V Leiden are more likely to develop abnormal blood clots (also called thrombophilia), particularly deep venous thrombosis (DVT) and pulmonary emboli (PE).
According to the National Institute of Health’s National Library of Medicine, DVTs most often occur in the legs; however, they can also happen in the brain, eyes, liver, and kidneys, and other parts of the body. Sometimes these DVT blood clots will break away from their original sites and travel through the bloodstream to lodge in the lungs to cause PE. Both of these can be very dangerous and deadly.
Though both men and women suffer from this disorder, women have some special considerations. First of all, the Mayo Clinic (and all the other sources linked thus far) said that being pregnant and hormone use (like taking oral contraceptive pills or hormone replacement therapy) both increase the risk of DVT and PE especially for women with Factor V Leiden. In fact, the disorder can lead to miscarriages as well.
Other risks factors that people with the disorder need to be aware of are:
- Taking medications to treat breast cancer or prevent a recurrence of breast cancer, called selective estrogen receptor modulators (SERMS), such as tamoxifen and raloxifene (Evista)
- Being over age 60
- Being overweight or obese
- Getting a leg injury
- Having surgery or other invasive medical procedures
- Traveling for more than a few hours, especially by airplane
Each of these already contribute to the possibilities of blood clots on their own; however, in conjunction with Factor V Leiden, an individual is in much more danger.
As for treatment, if you have not yet had a blood clot, then you really do not have many options. My doctor suggested that I take 81 milligrams of coated aspirin every day, but otherwise nothing else until I have a blood clot. Obviously, staying healthy and active are important as is maintaining a healthy weight. For women with the disorder, avoiding hormones through oral contraceptives or hormone replacement therapy are things to consider.
This latter is difficult. If a woman does not want children, that means that she uses condoms, has a tubal ligation, or her partner has a vasectomy. If she opts for the tubal ligation, then she runs the risk of a surgery-induced blood clot. These are difficult decisions.
If you have had a blood clot, then doctors often prescribe blood thinners, which are anticoagulants. Some options of blood thinners mentioned were warfarin, heparin, or low molecular weight heparin.
I’m not going to lie; I’m a tad bit scared. I have some serious decisions to consider and will have some changes. Many people have lived with Factor V Leiden, and so can I, but that does not make it any less scary. Researching this and writing this blog has helped…I hope it helps readers, too.
Image Credit: Photos.com