Hughes Syndrome – The ‘Sticky Blood’ Condition

What Causes Recurring Miscarriages and Blood Clots?

Hughes syndrome, sometimes known as antiphospholipid syndrome or ‘sticky blood,’ is a disorder characterised by abnormal blood clotting in both veins and arteries. It is caused by antibodies called antiphospholipid antibodies which lead to overactivity of the immune system and increased blood clotting.

The condition can affect anyone at any age and blood clots can occur suddenly, like deep vein thrombosis in the leg. In some cases, the only symptom is recurrent miscarriage, often later in pregnancy due to blood clots in the placenta blocking nutrients to the foetus.

Other symptoms can include:

  • Migraine headaches
  • Epilepsy
  • Memory loss
  • Skin discolouration or blotchiness on areas like knees and wrists

Hughes syndrome is also an important cause of strokes, heart attacks, and clots in other organs since it increases the risk of all types of thrombosis.

There is a strong link between Hughes syndrome and lupus – around 1 in 5 women with lupus also have Hughes syndrome. However, many people have Hughes syndrome without lupus. Both conditions are more common in women.

Hughes syndrome was first identified in 1983 by Graham Hughes, a London rheumatologist who noticed high levels of blood clotting in patients with lupus. He published a study describing the condition, now known as antiphospholipid syndrome or Hughes syndrome, in an attempt to raise awareness and improve treatment for affected patients.

The underlying mechanism involves antiphospholipid antibodies (aPL) binding to proteins in the blood and making them ‘sticky’, increasing clot formation. These antibodies can develop after infection and are more common in lupus patients, but also occur independently.

While the exact prevalence is unknown, Hughes syndrome may affect up to 1 in 5 people. Women are affected approximately 5 times more than men. The condition usually appears between the ages of 20 and 50.

The aPL antibodies cause issues by activating platelets, inhibiting natural anticoagulants, and directly interfering with the proteins involved in preventing clot formation. Genetic factors can also play a role in someone’s susceptibility.

Many patients don’t have noticeable symptoms at first and Hughes syndrome is detected after a clotting event like deep vein thrombosis, stroke, or miscarriage. Early testing in at-risk groups could identify more cases through simple blood tests.

Diagnosing ‘Sticky Blood’: What Tests are Used?

Hughes syndrome is diagnosed using blood tests that look for antiphospholipid antibodies and lupus anticoagulant to confirm the presence of abnormal antibodies that lead to excessive clotting.

The diagnosis depends on the combination of test results and the individual’s symptoms and medical history. Ongoing monitoring requires regular blood tests if taking medications like warfarin to ensure appropriate blood thinning.

How is Hughes Syndrome Treated?

Treatment focuses on thinning the blood to reduce risk of clotting. Mild cases may use aspirin, which makes blood less sticky and reduces clotting risks. More severe cases require stronger blood thinners like heparin or warfarin.

Heparin is injected and can’t be used long-term while warfarin carries risks in pregnancy. Other therapies aim to limit clotting risk by stopping smoking, maintaining a healthy weight, and staying active.

Treatment is lifelong and focuses on thinning the blood enough to prevent clots while avoiding excess bleeding, which requires regular monitoring and dosage adjustments. Low-dose aspirin is often a first option, with heparin or warfarin used for more severe cases.

Living with ‘Sticky Blood’: What Should Patients Know?

If you’ve been diagnosed with Hughes syndrome, work closely with your doctor for ongoing monitoring and to determine the appropriate treatment plan based on your medical history and symptoms. Lifestyle changes can also help minimise clotting risks.

Women diagnosed with Hughes syndrome should be aware of potential pregnancy complications when trying to conceive due to the blood clotting risks. Be sure to discuss medication and treatment options with your doctor if pregnant or trying to get pregnant.

While Hughes syndrome has no cure, various treatment approaches allow patients to manage symptoms and limit risks of clots or miscarriage. Being aware of new or worsening symptoms and working with your doctor for regular testing is important for staying healthy with this condition.

Photo “Hughes Syndrome” by Anthony Cunningham for Zoom Health

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