What is antiphospholipid syndrome?

Antiphospholipid syndrome is an autoimmune disease. This happens when your immune system fights against normal cells.

In this condition, your body makes antibodies that attack a kind of fat (phospholipids) in cells. This causes many problems. It makes your blood clot too easily. Your body may also make anticardiolipin antibodies. Cardiolipin is a type of fat in cells.

This disease often causes:

• Thrombosis. This happens when blood clots form in your arteries or veins, especially in your legs. If clots form in the blood vessels in your brain, you could have a stroke. Clots can also cause a blockage in the arteries to the lungs. This can be life-threatening.

• Thrombocytopenia. This happens when your blood is low in platelets. Platelets are cells that are needed for your blood to clot.

• Pregnancy loss (miscarriage). This may happen more than once. 

This condition affects women more often than men. People with this health problem are more likely to have pregnancy problems. It isn’t known if antiphospholipid syndrome gets worse or stays the same during pregnancy.  

This condition may also be called Hughes syndrome, sticky blood syndrome, and antiphospholipid antibody syndrome.

What causes antiphospholipid syndrome?

The cause of this condition is unknown. It may be caused by factors in the environment and your genes. It seems to run in some families.

What are the symptoms of antiphospholipid syndrome?

People with this condition don't have set symptoms. It’s often found when a person has had: 

• A blood clot in a deep vein or artery 

• Low platelet count

• Stroke or ministroke

• Blood clot in the lungs

• Unexplained miscarriages

• Red blood cells that are destroyed (hemolytic anemia)

• A purple, lacy skin problem called livedo reticularis

How is antiphospholipid syndrome diagnosed?

It’s often difficult to diagnose this condition. Your healthcare provider will ask you about your health history. They will ask you about blood clots and pregnancies. You’ll also have an exam.

Your healthcare provider will also do blood tests. These may include tests to check for the following:

• Lupus anticoagulant

• Anticardiolipin antibody

• Anti-β2-glycoprotein

Your healthcare provider may need to repeat all or some of these tests to confirm your diagnosis.

How is antiphospholipid syndrome treated?

Treatment for this condition often includes blood-thinner (anticoagulant) medicine to lower your chance of getting blood clots. You may need different medicines or amounts during pregnancy. 

If you have this condition and are pregnant, your healthcare provider will watch you closely. You’ll likely need checkups more often. You may also need to have the following tests done:

• Tests to check your blood clotting levels

• Tests to check for high blood pressure 

• Ultrasound. This test shows your internal organs and blood flow through vessels. This test is also done to check your baby’s growth, development, and well-being.

• Fetal heart monitoring. This test checks your baby’s heart rate. It looks for signs of distress.

• Doppler ultrasound studies. This test checks the blood flow in your uterus and umbilical cord.

Getting early prenatal care and working closely with your healthcare provider can increase your chance of having a healthy pregnancy.

What are possible complications of antiphospholipid syndrome?

This illness can cause serious problems during pregnancy for both you and your baby. People who have this condition are also at risk for other health problems. Some of these include:

• Stroke

• Blood clots

• High blood pressure in pregnancy (preeclampsia or toxemia)

• Stillbirth

• Multiple miscarriages

• Poor fetal growth

• Preterm birth

Living with antiphospholipid syndrome

Antiphospholipid syndrome is a lifelong condition. You will need treatment. This will lower your chance of getting blood clots. It will also reduce your risk for problems, such as stroke and miscarriage.

Medicine can reduce your risk for blood clots, but they can still happen. It’s important to follow your healthcare provider’s care plan and have tests done as often as they recommend. Support groups can help you meet other people with your condition. Ask your healthcare provider about support groups in your area.

When should I call my healthcare provider?

Call your healthcare provider right away if you have signs of a stroke or blood clot.

Symptoms of a stroke include trouble talking, smiling, moving your arms, or walking. Signs of a blood clot include leg pain or swelling and trouble breathing.

You should also call your healthcare provider if you’re bleeding or bruising more than normal.

Key points about antiphospholipid syndrome in pregnancy

• Antiphospholipid syndrome is an autoimmune disease. It can cause life-threatening blood clots.

• If you have this condition in pregnancy, your healthcare provider will watch you closely.

• Medicine can help reduce your risk for blood clots, but they can still happen.

• Getting early prenatal care and working with your healthcare provider can increase your chance of having a healthy pregnancy.

Next steps

Tips to help you get the most from a visit to your healthcare provider:

• Know the reason for your visit and what you want to happen.

• Before your visit, write down questions you want answered.

• Bring someone with you to help you ask questions and remember what your provider tells you.

• At the visit, write down the name of a new diagnosis, and any new medicines, treatments, or tests. Also write down any new instructions your provider gives you.

• Know why a new medicine or treatment is prescribed, and how it will help you. Also know what the side effects are.

• Ask if your condition can be treated in other ways.

• Know why a test or procedure is recommended and what the results could mean.

• Know what to expect if you do not take the medicine or have the test or procedure.

• If you have a follow-up appointment, write down the date, time, and purpose for that visit.

• Know how you can contact your provider if you have questions.