Hemophilia is a condition that keeps blood from clotting normally. If blood doesn’t clot normally, people can bleed very easily or much more than normal. The bleeding can sometimes be life-threatening.
People with hemophilia are missing a protein in the blood called a “clotting factor.” Without this, the blood can’t clot normally. There are 2 main types of hemophilia (called “A” and “B”), depending on which clotting factor is the problem:
Hemophilia is a life-long condition that a person is born with. It is caused by an abnormal gene. Sometimes, parents pass this abnormal gene to their child. Other times, a child can get hemophilia from a new gene abnormality that happens before they are born. In some of these cases, parents might not know they have the abnormal gene, because they don’t have any symptoms. Boys and men are most likely to have hemophilia. It is very rare in girls or women.
Hemophilia can be mild or severe. It can be managed with different treatments.
Symptoms depend on how mild or severe a person’s hemophilia is. Some children start having symptoms from birth. For example, a baby boy might bleed much more than normal if he has a procedure to remove the skin that covers the tip of the penis (called “circumcision”). Other children, especially those with mild hemophilia, start having symptoms later on.
People with mild hemophilia usually bleed more than normal after an injury, procedure, or surgery.
People with severe hemophilia also bleed more than normal after an injury, procedure, or surgery. But they can also have bleeding that happens for no reason at all. This type of bleeding usually happens in a joint. The joints most often involved are the ankles, knees, and elbows. Blood in a joint can cause pain, swelling, stiffness, and trouble moving the joint. Over time, repeated bleeding in a joint can lead to long-term joint pain and damage.
Symptoms can also happen from bleeding in other parts of the body. These can include:
Yes. Your doctor or nurse can check for hemophilia by doing different blood tests.
Pregnant women who have the hemophilia gene have the chance of passing the gene along to their baby. Genetic testing can show if you have the gene. If you do, doctors can do a few things to help prevent problems:
Treatment depends on how severe a person’s hemophilia is. It also depends on whether the person is going to have a procedure or surgery.
The main treatment for hemophilia is called “factor replacement therapy.” This involves getting the clotting factor that the body is missing. There are different types of replacement clotting factors. Some are made from human blood, and others are made using cells grown in a lab. Replacement therapy goes into a vein. People can get this treatment in the hospital, or they can give it to themselves (or have someone else give it to them) at home.
Replacement therapy is used in 2 ways:
Deciding which treatment is best can be complicated. Hemophilia treatment centers can help people with hemophilia, and their doctors, decide which treatment is best. These centers also help people plan ahead for things like surgery.
Some people have something called an “inhibitor” in their blood. This can make factor replacement therapy not work as well. This is more common in hemophilia A than in hemophilia B. If tests show that you have an inhibitor, you might need other treatments. Your doctor will talk to you about the options.
In the past, factor replacement therapy made from human blood sometimes had viruses in it. This could include HIV (the virus that causes AIDS) and the virus that causes hepatitis C, which could then infect the person being treated for hemophilia. Today, replacement therapy is made in a safer way and does not contain HIV or hepatitis C virus.
To avoid bleeding problems, people with hemophilia should:
If your child has hemophilia, you should let caregivers, daycare, or the school know. Teach them which symptoms to watch for, and how to treat a bleed.
These are prescription medicines that make your blood less likely to clot. “Oral” means medicine you take as a pill. There are other medicines that are given as a shot or through a thin tube that goes into a vein, called an “IV.”
Medicines used to prevent or treat blood clots are also known as “anticoagulants” or “blood thinners.” But they do not actually thin the blood.
There are several oral medicines used to prevent or treat blood clots. They include:
Apixaban, dabigatran, edoxaban, and rivaroxaban are also called “direct oral anticoagulants.” Each of these medicines blocks the function of a specific clotting factor. (Clotting factors are proteins in the blood that help it to clot.) Warfarin is also called a “vitamin K antagonist.” It blocks the body’s use of vitamin K in making some of the clotting factors.
The main reasons doctors prescribe these medicines are to prevent blood clots or to treat blood clots that have already formed.
Doctors prescribe these medicines to prevent blood clots in:
Nothing can completely prevent all blood clots, but these medicines can make clots less likely to form.
Doctors also prescribe these medicines for people who have already had a clot, to prevent more problems. This includes:
These medicines do not dissolve clots, but they keep them from growing bigger and moving to another part of the body. If a clot moves to a lung or to the brain, it can cause serious problems. These medicines lower the chances that the blood clot might get bigger or move to another part of the body, and they lower the chances of new clots forming.
Each medicine is different in terms of the dose, how often you take it, the cost, and how your diet or other medicines might affect it.
The table answers some common questions about the differences. Some of the main differences include:
If you take warfarin, you will need to get your blood tested on a regular schedule to check how it is clotting. This is important in order to make sure you are always getting the dose you need.
Your doctor can talk to you about your condition, options, and preferences. For some people, warfarin is the best choice. This includes people with a mechanical heart valve or people with a condition called “antiphospholipid syndrome.”
For others, one of the other medicines might be a better choice.
In women who are pregnant, doctors do not recommend any of these medicines. Pregnant women who need to take a medicine to prevent or treat blood clots have to take a different medicine that comes in a shot.
Von Willebrand disease is a bleeding disorder. People with the disorder sometimes bruise easily or bleed too much when they get cut.
Von Willebrand disease is caused by an abnormal gene and runs in families. In some cases, a family might not know about it if the disease is mild. Rarely, people can get a kind of von Willebrand “syndrome” because of another condition, rather than a gene.
The symptoms of von Willebrand disease are often mild. For some people, the symptoms are so mild that they never have problems.
If you have von Willebrand disease, you might:
In women, symptoms can also include:
Yes. If your doctor or nurse suspects you have von Willebrand disease, he or she can check for it with a blood test. He or she will also want to know as much as possible about the way you have bled in the past. Plus, your doctor or nurse will want to know if any of your family members have the disorder or have had problems with bleeding or bruising.
Yes. You can follow these tips:
There are many medicines used to treat von Willebrand disease. These medicines come in shots, pills, gels, and nasal sprays. You and your doctor or nurse might have to try a few different treatment approaches before you find the one that works best for you.
If you have lost a lot of blood, you might need to take iron supplements.
If you want to have a baby, you will need to be watched closely during your pregnancy. This way, serious bleeding can be prevented or treated. Also, you will need to talk with your doctor about whether you can get an epidural or spinal block during labor. You might need other treatments to reduce your risk of bleeding.
Most women do not need treatment while they are pregnant, because von Willebrand disease is usually less severe during pregnancy. But after the baby is born, some women can start to have serious bleeding. For 1 to 3 weeks after giving birth, women often need to take extra medicines to prevent bleeding.
Deep vein thrombosis is the medical term for blood clots in the deep veins of the leg. Deep vein thrombosis, or “DVT” for short, can be dangerous.
If a blood clot forms inside a blood vessel, it can clog the vessel and keep blood from getting where it needs to go. When that happens to 1 of the veins deep within the leg, blood can back up and cause swelling and pain.
Another problem with blood clots in veins is that they can travel to other parts of the body and clog blood vessels there. Blood clots that form in the legs, for example, can end up blocking blood vessels in the lungs. This can make it hard to breathe and sometimes, when they are large, can lead to death. When blood clots travel to the lungs doctors call it “pulmonary embolism” or “PE.”
DVT can cause the following symptoms in the involved leg:
Sometimes clots form in the veins that are closer to the surface of the skin, called the “superficial veins.” Those blood clots cause a different set of symptoms. Blood clots in the veins near the surface of the skin are more painful and cause redness or infection. These clots sometimes also cause the veins to harden and bulge into ridges that look like cords. This is most common with the veins below the knee.
If you think you have a blood clot in your leg, call your doctor or nurse right away. Blood clots in the veins near the surface of the skin are less dangerous. But blood clots in the deep veins of the leg are more serious. Your doctor or nurse can run tests to find out if you do have a clot that needs to be treated.
Blood clots in the lungs can cause:
If you get any of these symptoms, especially if they happen over a short period of time (hours or days) or get worse quickly, call for an ambulance (in the US and Canada, dial 9-1-1). At the hospital, doctors can run tests to find out if you do have a clot. Blood clots in the lungs can lead to death. That’s why it’s important to act fast and find out if there is a clot.
DVT is treated with medicines that keep the clot from getting bigger and travelling to the lung. These medicines are called “anticoagulants” or “blood thinners,” although they do not actually thin the blood. Some come in shots and others come in pills. DVT is usually treated first in the hospital.
If you have had a clot, your doctor will prescribe 1 of these medicines to lower your risk of getting more clots in the future. You will need to take the medicine for at least 3 months (and sometimes longer). Some people are first put on a medicine that comes as a shot, called heparin. This might be for a few days, or longer if for some reason you can’t take pills.
The medicines do not dissolve existing blood clots, but they do keep them from getting bigger. They also help keep new blood clots from forming. Taking the medicine for a few months is important because it gives your body time to dissolve the old clot. It’s also important because people who have a clot are at risk of developing another clot, especially in the first few months.
There are different oral medicines (pills) used to prevent and treat blood clots. They include apixaban (brand name: Eliquis), dabigatran (brand name: Pradaxa), edoxaban (brand names: Savaysa, Lixiana), rivaroxaban (brand name: Xarelto), and warfarin (brand name: Coumadin). Each medicine is different in terms of the dose, how often you take it, the cost, and how your diet or other medicines might affect it. Your doctor can talk to you about your options and preferences.
If your doctor prescribes one of these medicines:
People who cannot take medicines to prevent and treat blood clots, or who do not get enough benefit from the medicines, can get a different treatment. This is called an “inferior vena cava filter” (also called an IVC filter). The inferior vena cava is the large vein that carries blood from your legs and the lower half of your body back up to your heart. IVC filters go inside the inferior vena cava. They filter and trap any large clots that form below the location of the filter. Your doctor might suggest one of these filters for you if:
In some cases, a person has a clot that is severe enough to cause gangrene (cut off the blood supply to your leg). If this happens, doctors can give medicine to dissolve the clot. This is sometimes called “clot-busting” medicine, and is given through a catheter (a small tube inserted into the vein). In some cases, doctors will do surgery to remove the clot.
Yes. People sometimes form clots because they have been sitting still for too long. People who travel on long airplane flights, for example, are at increased risk of blood clots. Here are some things you can do to help prevent a clot during a long flight:
Pulmonary embolism (or “PE”) is a blockage in 1 or more of the blood vessels that supply blood to the lungs. Most often these blockages are caused by blood clots that form elsewhere and then travel to the lungs. In rare cases, blockages can also be caused by air bubbles, tiny globs of fat, or pieces of tumor that travel to the lungs.
If a blood clot forms or gets stuck inside a blood vessel, it can clog the vessel and keep blood from getting where it needs to go. When that happens in the lungs, the lungs can get damaged. Having blocked arteries in the lung can also make it hard to breathe and can even lead to death.
Most blood clots in the lungs actually form in the legs or pelvic area (where the legs connect to the body) and then travel to the lungs. Anyone who has had a blood clot in the lungs or who is at risk of a clot should know the symptoms of clots in these areas.
Common symptoms include:
If you get any of these symptoms, especially if they happen over a short period of time (hours or days) or get worse quickly, call for an ambulance (in the US and Canada, dial 9-1-1). At the hospital, doctors can run tests to find out if you do have a clot. Blood clots in the lungs can lead to death. That’s why it’s important to act fast and find out if there is a clot.
Blood clots in the legs cause different symptoms depending on whether the clots form in veins deep in the leg or in the veins near the surface of the skin.
Blood clots in the deep veins of the legs (also called “DVT”) are the most dangerous. Clots in the deep veins can cause:
Blood clots in the veins near the surface of the skin (called “superficial veins”) are more painful, and can cause redness or infection. These clots sometimes also cause the veins to harden and bulge into ridges that look like cords. This is most common with the veins below the knee.
If you think you have a blood clot in your leg, call your doctor or nurse right away. Blood clots in the veins near the surface of the skin are less dangerous. But blood clots in the deep veins of the leg are more serious and are more likely to travel to the lungs. Your doctor or nurse can do tests to find out if you do have a clot and where it is.
Yes. There are several tests doctors can use to find out if a person has a blood clot in a lung. The most common tests include:
Blood clots in the lungs are treated with medicines that keep clots from getting bigger. These medicines are called “anticoagulants” or “blood thinners,” although they do not actually thin the blood. Some come in shots and others come in pills. Most people being treated for a blood clot in the lung are treated first in the hospital.
If you have had a clot, your doctor will prescribe 1 of these medicines to lower your risk of getting more clots in the future. You will need to take the medicine for at least 3 months (and sometimes longer). Some people are first put on a medicine that comes as a shot, called heparin. This might be for a few days, or longer if for some reason you can’t take pills.
The medicines do not dissolve existing blood clots, but they do keep them from getting bigger. They also help keep new blood clots from forming. Taking the medicine for a few months is important because it gives your body time to dissolve the old clot. It’s also important because people who have a clot are at risk of developing another clot, especially in the first few months.
There are different oral medicines (pills) used to prevent and treat blood clots. They include apixaban (brand name: Eliquis), dabigatran (brand name: Pradaxa), edoxaban (brand names: Savaysa, Lixiana), rivaroxaban (brand name: Xarelto), and warfarin (brand name: Coumadin). Each medicine is different in terms of the dose, how often you take it, the cost, and how your diet or other medicines might affect i. Your doctor can talk to you about your options and preferences.
If your doctor prescribes one of these medicines:
People who cannot take medicines to prevent and treat clots, or who do not get enough benefit from the medicines, can get a different treatment. This is called an “inferior vena cava filter” (also called an IVC filter). The inferior vena cava is the large vein that carries blood from your legs and the lower half of your body back up to your heart. IVC filters go inside the inferior vena cava. They filter and trap any large clots that form below the location of the filter. Your doctor might suggest 1 of these filters for you if:
In some cases, a person has a clot that is severe enough to cause low blood pressure and even shock. (Shock is when blood pressure gets too low, and not enough blood can get to the body’s organs and tissues.) If this happens, doctors can give medicine to dissolve the clot. This is sometimes called “clot-busting” medicine, and is given through a catheter (a small tube inserted into the vein). In some cases, doctors will do surgery to remove the clot.
Yes. People sometimes form clots because they have been sitting still for too long. People who travel on long airplane flights, for example, are at increased risk of blood clots. Here are some things you can do to help prevent a clot during a long flight:
Factor V Leiden (FVL) is a condition that makes blood more likely to form clots in the legs, lungs, and other parts of the body in some people.
Factor V Leiden is a life-long condition that people are born with. It is caused by an abnormal gene. Parents pass the abnormal gene to their child. Often, people might not know they have the abnormal gene because they don’t have any symptoms.
The “V” is the Roman numeral for “five.” Leiden is a city in Holland where the abnormal gene was discovered.
Most people with factor V Leiden never have any symptoms. But some people with factor V Leiden have a higher risk of getting blood clots, especially in the leg or the lungs. When clots do occur, they can cause:
Some doctors believe that factor V Leiden can also increase the chance of other problems, including stroke, heart attack, or miscarriage (when a pregnancy ends on its own before the baby can live outside the womb). But other doctors do not. If there is an increased risk of these conditions, it is a small increase.
See your doctor or nurse right away if you think you might have a blood clot in your leg. If you have symptoms of a stroke or a blood clot in the lungs, call for an ambulance (in the US and Canada, dial 9-1-1). These conditions are very serious and can be life-threatening. Signs of a stroke include drooping of 1 side of the face, arm weakness, and trouble speaking normally.
If one of your relatives has been told that they have factor V Leiden, you can talk to your doctor or nurse to find out if you should be tested.
Yes. If your doctor or nurse thinks you might have factor V Leiden, they can order a blood test to look for the abnormal gene.
If you do have factor V Leiden, you can tell your relatives (parents, siblings, or children) so they can decide whether to be tested. Their doctor or nurse can help them make this decision.
If factor V Leiden causes a blood clot, the main treatment is medicines that keep the clot from getting bigger. Some of these medicines come in shots and others come in pills. Doctors sometimes use a stronger medicine that gets rid of clots or do surgery to remove a blood clot in the lungs if it is very severe.
People who have had a blood clot usually take a medicine in pill form to prevent clots for at least 3 months after the clot is found, and often for longer. This medicine helps keep new blood clots from forming. It is important because people who have one clot often have another later on.
Yes. The best thing you can do is move your legs often. This keeps the blood moving. Not moving for a long period of time can increase your risk of clots. Examples are having surgery, being stuck in bed, or taking a long airplane or car trip.
To help prevent a clot on a long plane or car ride, you can:
Women with factor V Leiden should ask a doctor or nurse if it is safe to take birth control pills or other hormone treatments. The hormones raise the risk of blood clots. This can be dangerous for women with factor V Leiden.
If you are having surgery, let your doctor know you have factor V Leiden. They will decide if you need medicine or other precautions to prevent blood clots.
If you have factor V Leiden and want to get pregnant, talk to your doctor or nurse. You will be monitored for blood clots during your pregnancy and after the birth. You might also get medicine to help lower the risk of blood clots.