I have Antiphospholipid Antibody Syndrome
Antiphospholipid (AN-te-fos-fo-LIP-id) antibody syndrome (APS) is an autoimmune disorder. Autoimmune disorders occur if the body's immune system makes antibodies that attack and damage tissues or cells.
Antibodies are a type of protein. They usually help defend the body against infections. In APS, however, the body makes antibodies that mistakenly attack phospholipids—a type of fat.
Phospholipids are found in all living cells and cell membranes, including blood cells and the lining of blood vessels.
When antibodies attack phospholipids, cells are damaged. This damage causes blood clots to form in the body's arteries and veins. (These are the vessels that carry blood to your heart and body.)
Usually, blood clotting is a normal bodily process. Blood clots help seal small cuts or breaks on blood vessel walls. This prevents you from losing too much blood. In APS, however, too much blood clotting can block blood flow and damage the body's organs.
Overview
Some people have APS antibodies, but don't ever have signs or symptoms of the disorder. Having APS antibodies doesn't mean that you have APS. To be diagnosed with APS, you must have APS antibodies and a history of health problems related to the disorder.
APS can lead to many health problems, such as stroke, heart attack, kidney damage, deep vein thrombosis (throm-BO-sis), and pulmonary embolism (PULL-mun-ary EM-bo-lizm).
- APS also can cause pregnancy-related problems, such as multiple miscarriages, a miscarriage late in pregnancy, or a premature birth due to eclampsia (ek-LAMP-se-ah). (Eclampsia, which follows preeclampsia, is a serious condition that causes seizures in pregnant women.)
Very rarely, some people who have APS develop many blood clots within weeks or months. This condition is called catastrophic antiphospholipid syndrome (CAPS).
People who have APS also are at higher risk for thrombocytopenia (THROM-bo-si-to-PE-ne-ah). This is a condition in which your blood has a lower than normal number of blood cell fragments called platelets (PLATE-lets). Antibodies destroy the platelets, or they’re used up during the clotting process. Mild to serious bleeding can occur with thrombocytopenia.
APS can be fatal. Death may occur as a result of large blood clots or blood clots in the heart, lungs, or brain.
Outlook
APS can affect people of any age. However, it's more common in women and people who have other autoimmune or rheumatic (ru-MAT-ik) disorders, such aslupus. ("Rheumatic" refers to disorders that affect the joints, bones, or muscles.)
APS has no cure, but medicines can help prevent its complications. Medicines are used to stop blood clots from forming. They also are used to keep existing clots from getting larger. Treatment for APS is long term.
If you have APS and another autoimmune disorder, it's important to control that condition as well. When the other condition is controlled, APS may cause fewer problems.
Other Names for Antiphospholipid Antibody Syndrome
- Anticardiolipin antibody syndrome, or aCL syndrome
- Antiphospholipid syndrome
- aPL syndrome
- Hughes syndrome
- Lupus anticoagulant syndrome
What Causes Antiphospholipid Antibody Syndrome?
Antiphospholipid antibody syndrome (APS) occurs if the body's immune system makes antibodies (proteins) that attack phospholipids.
Phospholipids are a type of fat found in all living cells and cell membranes, including blood cells and the lining of blood vessels. Researchers don’t know what causes the immune system to make antibodies against phospholipids.
APS causes blood clots to form in the body's arteries and veins. Usually, blood clotting is a normal bodily process. It helps seal small cuts or breaks on blood vessel walls. Clotting prevents you from losing too much blood. In APS, however, too much clotting can block blood flow and damage the body's organs.
Researchers don't know why APS antibodies cause blood clots to form. Some believe that the antibodies damage or affect the inner lining of the blood vessels, which causes clotting. Others believe that the immune system makes antibodies in response to blood clots damaging the blood vessels.
Who Is at Risk for Antiphospholipid Antibody Syndrome?
Antiphospholipid antibody syndrome (APS) can affect people of any age. The disorder is more common in women than men, but it affects both sexes.
APS also is more common in people who have other autoimmune or rheumatic disorders, such as lupus. ("Rheumatic" refers to disorders that affect the joints, bones, or muscles.)
About 10 percent of all people who have lupus also have APS. About half of all people who have APS also have another autoimmune or rheumatic disorder.
Some people have APS antibodies, but don't ever have signs or symptoms of the disorder. Having APS antibodies doesn't mean that you have APS. To be diagnosed with APS, you must have APS antibodies and a history of health problems related to the disorder.
However, people who have APS antibodies without signs or symptoms are at risk of developing APS. Health problems, other than autoimmune disorders, that can trigger blood clots include:
- Smoking
- Prolonged bed rest
- Pregnancy and the postpartum period
- Birth control pills and hormone therapy
- Cancer and kidney disease
What Are the Signs and Symptoms of Antiphospholipid Antibody Syndrome?
The signs and symptoms of antiphospholipid antibody syndrome (APS) are related to abnormal blood clotting. The outcome of a blood clot depends on its size and location.
Blood clots can form in, or travel to, the arteries or veins in the brain, heart, kidneys, lungs, and limbs. Clots can reduce or block blood flow, damaging the body's organs and possibly causing death.
Major Signs and Symptoms
Major signs and symptoms of blood clots include:
- Chest pain and shortness of breath
- Pain, redness, warmth, and swelling in the limbs
- Ongoing headaches
- Speech changes
- Upper body discomfort in the arms, back, neck, and jaw
- Nausea (feeling sick to your stomach)
Blood clots can lead to stroke, heart attack, kidney damage, deep vein thrombosis, and pulmonary embolism.
Pregnant women who have APS are at higher risk for miscarriages, stillbirths, and other pregnancy-related problems, such as preeclampsia.
Preeclampsia is high blood pressure that occurs during pregnancy. This condition may progress to eclampsia. Eclampsia is a serious condition that causes seizures in pregnant women.
Some people who have APS may develop thrombocytopenia. This is a condition in which your blood has a lower than normal number of blood cell fragments called platelets.
Mild to serious bleeding causes the major signs and symptoms of thrombocytopenia. Bleeding can occur inside the body (internal bleeding) or underneath the skin or from the surface of the skin (external bleeding).
Other Signs and Symptoms
Other signs and symptoms of APS include chronic (ongoing) headaches, memory loss, and heart valve problems. Some people who have APS also get a lacy-looking red rash on their wrists and knees.
Living With Antiphospholipid Antibody Syndrome
Antiphospholipid antibody syndrome (APS) has no cure. However, you can take steps to control the disorder and prevent complications.
Take all medicines as your doctor prescribes and get ongoing medical care. Talk with your doctor about healthy lifestyle changes and any concerns you have.
Medicines
You may need to take anticoagulants, or "blood thinners," to prevent blood clots or to keep them from getting larger. You should take these medicines exactly as your doctor prescribes.
Tell your doctor about all other medicines you're taking, including over-the-counter or herbal medicines. Some medicines, including over-the-counter ibuprofen or aspirin, can thin your blood. Your doctor may not want you to take two medicines that thin your blood because of the risk of bleeding.
Women who have APS shouldn't use birth control or hormone therapy that contains estrogen. Estrogen increases the risk of blood clots. Talk with your doctor about other options.
Ongoing Medical Care
If you have APS, getting regular medical checkups is important. Have blood testsdone as your doctor directs. These tests help track how well your blood is clotting.
The medicines used to treat APS increase the risk of bleeding. Bleeding might occur inside your body (internal bleeding) or underneath the skin or from the surface of the skin (external bleeding). Know the warning signs of bleeding, so you can get help right away. They include:
- Unexplained bleeding from the gums and nose
- Increased menstrual flow
- Bright red vomit or vomit that looks like coffee grounds
- Bright red blood in your stools or black, tarry stools
- Pain in your abdomen or severe pain in your head
- Sudden changes in vision
- Sudden loss of movement in your limbs
- Memory loss or confusion
A lot of bleeding after a fall or injury or easy bruising or bleeding also might mean that your blood is too thin. Ask your doctor about these warning signs and when to seek emergency care.
