Factor V Leiden: What it is and How to Spot the Disorder

Factor V Leiden is a blood disorder that affects more people than might realize. It's the most common hereditary blood disorder in the United States, being present in 5% of the population and the most common hereditary blood disorder in Eurasians which ratios being as high as 10%. It was named after the city Leiden in The Netherlands by the professor who identified it in 1994. The disease is less common in Hispanics and African-Americans and is extremely rare in people of Asian descent. Many people, such as myself, will never even know they have this gene, which is passed down from your parents, unless a problem arises.

There are two forms of this disorder - heterozygous and homozygous. Heterozygous is the more common of the two forms. The gene responsible for the normal production of factor V has two copies. If you inherit only one copy of the defective gene, you are heterozygous. If you inherit two copies - one from each parent - you are homozygous. Those who are homozygous have a much greater risk of blood clots in veins deep within muscle that may travel to the lungs than do those who are heterozygous.

This disorder is a variant of the protein Factor V that is needed for blood clotting. People with Factor V Leiden have blood that is at an increase for clotting, causing all types of complications. Some of the complications that can arise are venous thrombosis, which are blood clots in veins, and pulmonary embolism, which are blood clots in the lungs. What I experienced was a blood clot in my intestine.

I started out experiencing abdominal pain that eventually led me to the emergency room. The doctors simply thought I had a stomach virus and sent me home. The pain didn't go away but would lessen at times. I eventually went back to the emergency room after experiencing pain so bad I couldn't stand it. I knew it was more than a virus but no one seemed to know what was wrong. After many tests and no clue, my physician decided to do exploratory surgery. What they found was 10 feet of dead intestine. The clot had started "killing" my intestine, which is called Mesenteric Vein Thrombosis. After removing the dead intestinal part, I was put on blood thinners (anti-coagulants) and had to stay in ICU, then the hospital for approximately two weeks until my protime levels were acceptable. A Protime test evaluates the amount of time it takes for the blood to form clots.

In the hospital I was on the drug, Heparin. After being released, the doctor put me on a prescription of Coumadin, which is a blood thinner. I remained on Coumadin for about 2 years when I was allowed to stop taking them and have had no problems since. However, I had to have a protime test twice a week for the entire time I was on the Coumadin. Coumadin can be a very dangerous drug if used improperly. I even had to wear a bracelet saying I was a user of this particular treatment.

Some things that you can do to avoid clotting if you have this disorder are:

Avoiding standing or sitting for long periods of times.

Being overweight or smoking increases risks.

If you are a woman, taking birth control pills increase your risk.

Also, before becoming pregnant you should consult with your doctor.

A simple test can now tell doctors if someone has this disorder. If you see warning signs please have this test done. Some of the signs I never would have noticed were:

Giving blood and it taking far longer than anyone else.

Having a cut that barely bleeds.

Light or almost non-existent menstrual cycles.

Please see a doctor if you experience any kind of symptoms with your blood that might cause you alarm. It really could save your life.