Antiphospholipid syndrome

Overview

Antiphospholipid syndrome (APS) is a condition where the immune system mistakenly produces antibodies that attack certain fats called phospholipids. This can make the blood clot more easily than normal, leading to problems like deep vein thrombosis (DVT) or pregnancy complications.

APS is considered a rare condition, affecting about 1 in 2000 people. However, it may be underdiagnosed because some people have no symptoms.

It can affect people of any age, but is most common in adults under 50. Women are more likely to be diagnosed, especially during their reproductive years.

Symptoms

Common symptoms

• Blood clots in the legs (deep vein thrombosis) causing swelling, pain, and redness.
• Blood clots in the lungs (pulmonary embolism) causing sudden chest pain, shortness of breath, or coughing up blood.
• Repeated miscarriages or pregnancy complications.
• Stroke or transient ischemic attack (mini-stroke) in younger people.
• Livedo reticularis – a lace-like purple rash on the skin.

Symptoms in children

• Blood clots in the legs or lungs.
• Stroke or seizure.
• Rash (especially livedo reticularis).
• Headaches or vision problems.

Symptoms in older adults

• Blood clots in the legs or lungs.
• Stroke or heart attack.
• Cognitive changes, such as memory loss or confusion.
• Skin ulcers or gangrene.

Causes

Main causes

• The exact cause is unknown, but it is an autoimmune disorder where the immune system produces antibodies that attack phospholipids.
• These antibodies make blood more likely to clot.
• It can be primary (occurs alone) or secondary (occurs with another autoimmune condition like lupus).

Risk factors

• Having another autoimmune disease, such as lupus or rheumatoid arthritis.
• A family history of APS or other autoimmune conditions.
• Certain infections, such as syphilis or HIV, may trigger the antibodies.

When to see a doctor

See a doctor urgently if:

• If you have sudden chest pain, difficulty breathing, or coughing up blood.
• If you have a swollen, painful leg that may be a blood clot.
• If you have sudden severe headache, weakness, or trouble speaking.

Book a routine appointment if:

• If you have had a blood clot without a clear cause.
• If you have had repeated miscarriages or pregnancy complications.
• If you have a family history of APS or a related autoimmune disease.

Diagnosis

APS is diagnosed through a combination of blood tests and clinical history. The doctor will check for antiphospholipid antibodies in your blood, and you must have had at least one blood clot or pregnancy complication to be diagnosed.

Tests that may be done

• Blood tests to detect antiphospholipid antibodies (including lupus anticoagulant and anticardiolipin antibodies).
• Imaging tests such as ultrasound or CT scan to check for blood clots.
• In pregnancy, ultrasound to monitor the baby's growth and health.

What to expect at your appointment

Your doctor will ask about your symptoms, medical history, and any family history of blood clots or pregnancy loss. Blood tests are taken from your arm, and you may need repeat tests to confirm the diagnosis.

Treatment

Treatment aims to prevent blood clots and manage symptoms. It usually involves blood-thinning medications (anticoagulants). The choice and dose depend on your history of clots, pregnancy status, and other factors.

Self-care at home

• Stay active and avoid long periods of sitting or standing.
• Wear compression stockings if recommended by your doctor to prevent leg clots.
• Drink plenty of water, especially on long flights or car trips.
• Avoid smoking and limit alcohol, as they can increase clot risk.

Medical treatments

Doctors usually prescribe anticoagulants (blood thinners) to prevent clots. The type and dose are tailored to your risk. Some people may need treatment for life, while others may use it only during high-risk times like pregnancy or surgery. Your doctor will monitor your blood levels regularly to ensure safety.

When is surgery considered?

If you need surgery, your medical team will take extra precautions to prevent clots. You may need to temporarily stop blood thinners and use other methods to reduce clot risk. Always tell your surgeon you have APS.

Living with this condition

Living with APS means being aware of clot signs and taking medication as prescribed. You may need regular blood tests to check your blood levels. Most people can lead a normal life with proper management.

Lifestyle tips

• Wear a medical alert bracelet or carry a card that says you have APS.
• Tell all your healthcare providers, including dentists, about your condition.
• If you are planning pregnancy, work closely with a specialist before and during pregnancy.

Diet and exercise

A balanced diet low in vitamin K (found in green leafy vegetables) may be recommended if you are on certain blood thinners. Regular moderate exercise like walking is good for circulation. Avoid contact sports if you are on strong blood thinners.

Mental health and emotional wellbeing

Living with a chronic condition can cause worry about clots or pregnancy. It is normal to feel anxious or stressed. Talk to your doctor or a counsellor if you need support. Support groups can also help.

Prevention

It is not possible to prevent APS because it is an autoimmune condition. However, you can reduce the risk of blood clots by staying active, avoiding smoking, and managing other health conditions.

Vaccines

No specific vaccine for APS. However, keep up with routine vaccinations, especially flu and pneumonia, as infection can trigger flares or complicate anticoagulant therapy. Discuss with your doctor.

Screening programmes

Screening is not routine for the general public. If you have a family history of APS or a blood clot, your doctor may recommend testing. Pregnant women with recurrent miscarriages are often tested.

Complications

If left untreated

• Deep vein thrombosis (DVT) leading to pulmonary embolism (clot in the lungs).
• Stroke or heart attack.
• Repeated pregnancy loss.
• Kidney damage from clots in the kidneys.

Long-term outlook

With proper treatment, most people with APS can prevent clots and lead a full life. Although it is a lifelong condition, regular monitoring and medication greatly reduce risks. Advances in treatment continue to improve outcomes.

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