When I was diagnosed almost 20 years ago there was only one link on the web. I had questions and I didn’t know where to go for answers. Now there are many pages of information out there. I’m not a doctor. I just pass along information.
I’ve had multiple clotting events. I hope by sharing this information, you will not have the medical experiences that I have had. Please pass along any links you think are useful so I can update the site for all of us.
Factor V Leiden is the most common hereditary blood coagulation disorder in the United States. It is present in 5% of the Caucasian population and 1.2% of the African American population.
Factor V Leiden increases the risk of venous thrombosis 3-8 fold for heterozygous (one damaged gene inherited) and substantially more, 30-140 fold, for homozygous (two damaged genes inherited) individuals.
The prothrombin 20210 mutation is the second most common inherited clotting abnormality. It is more common than protein S and C deficiency and Antithrombin deficiency combined; 2% of the general population is heterozygous. It is only a mild risk factor for clots, but together with other risk factors (such as oral contraceptives, surgery, trauma, high blood pressure, obesity, smoking, etc) or combined with other clotting disorders (like Factor V Leiden), the risk of clotting increases dramatically.
Factor V Leiden can be associated with the following complications:
- Venous Thrombosis blood clots in veins, such as:
- Deep vein thrombosis (DVT), veins in arms and legs
- Superficial thrombophlebitis
- Sinus vein thrombosis, veins around the brain
- Mesenteric vein thrombosis, intestinal veins
- Budd-Chiari syndrome, liver veins
- Pulmonary Embolism (PE), blood clots in the lungs
- Arterial clots (stroke, heart attack) in selected patients (some smokers)
- Possibly with stillbirth or recurrent unexplained miscarriage
- Preeclampsia and/or eclampsia (toxemia while pregnant)
If you have experienced any of these complications, you may have Factor V Leiden. However, many people with Factor V Leiden remain completely healthy throughout their lives.Many of us with Factor V Leiden have had strokes and transient ischemic attacks (TIAs). An unproven association is gall bladder dysfunction, but many of us with thrombophilia have had trouble with or have had our gall bladders removed. A simple blood test, available since 1993, can test for Factor V Leiden. For more information on other clotting test that you can have done or for answers to questions about thrombophilia, please select the links above or below. The Recently Diagnosed section lists several blood tests that you can have done to determine if you have a clotting disorder.
Why am I doing this?
I found out I have Factor V Leiden in 1994 after having a stroke. I’d never heard of this coagulation disorder before and started researching it. I found that I’m a classic case of Factor V Leiden.
- In 1977 I had my first clot while on birth control pills, a superficial clot in my leg.
- In 1981 while pregnant I had pre-eclampsia
- I had a miscarriage in 1989
- I lost my gall bladder in 1992
- Stroke in 1994
- Two clots to my chest in 1995
- DVT from my thigh to my pelvis in 1995
- 1999 TIA related to my stroke in 1994
- 2001 – I found that I also have prothombin 20210a, another clotting disorder (The test for this was not available when I had my stroke). I also have abnormally high levels of homocysteine.
- 2004 – Another superficial clot in my leg
- 2010 – Clot under one of my toes
The combination of three clotting disorders is why I have had so many problems. They cascade on one another and make a clotting event more prone to happen. I am on anti-coagulants for life so that I do not have another major clotting event.
All these complications are typical of Factor V Leiden
My first team of doctors put me on meds that my body couldn’t tolerate and generally didn’t listen to me when I would ask questions. After dismissing my first two neurologists and the first hematologist – It took me a year to build up my current team. I wouldn’t want any one else with thrombophilia to have to go through the learning experiences I had to. That’s why I created the email forum. The more information that is passed between us, the better. Information is power!
Don’t forget to ask as many questions as you need to. If your doctor doesn’t seem interested – find another one.
About the webpage and mailing list
I started the webpage and email forum in 1998. The Web-depot was hosting my page along with hemophilia and a few other mailing lists. Michael Davon owned the Web-Depot and hosted the list. When he died, his friend Todd Finney took over his mailing lists and has been providing my email forum with free support. Recently I’ve moved to the site to a new sever hoping to implement some of the features they offer. I write my own HTML (so send any errors you see to me and I’ll fix them).
When I first started the email forum I wondered if anyone would join. I told my husband that if no one signed up in two weeks, I’d take if off the server and forget about the whole idea. I’m very proud to say that the list has over 1200 people on it and the emails are shared all over the world. The email forum and web page are provided by myself as a patient-driven informational resource. The list and names on it will never be sold or shared. It is private and non-commercially linked. If there is a phone number or company listed it is only because the particular company helped out some of us clotters.