Hughes syndrome

What is Hughes syndrome?

Hughes syndrome, also known as antiphospholipid syndrome or ‘sticky blood’ is a disorder characterized by blood clotting, both in the arteries and veins.

What causes Hughes Syndrome?

Hughes syndrome is caused by the presence of antibodies in the blood, called antiphospholipid antibodies. These antibodies make the immune system work too hard, increasing blood clotting. Blood clotting can affect anyone of any age and can happen suddenly e.g. leg thrombosis or over a number of years. For more information on deep vein thrombosis (DVT)click here.

What are the symptoms of Hughes Syndrome?

In some people the only symptom of Hughes syndrome is recurrent miscarriage (often late in pregnancy). This is due to small clots affecting the placenta, preventing vital nutrients getting to the growing baby. However, other symptoms could include any of the following:

• Headaches (migraine type).
• Epilepsy.
• Memory loss.
• Blotchiness of the skin, which causes bluish discolouration of certain areas of the body, such as the knees and wrists.

Hughes syndrome is also an important cause of thrombotic disease, including thrombosis of the leg or arm or of any internal organ. As a result there is a possibility it can cause strokes and heart attacks.

Am I at risk of Hughes Syndrome?

There is a strong link between people with lupus and those with Hughes syndrome, 1 in 5 women with lupus also have Hughes syndrome. Please click here to read more about lupus and the symptoms associated with lupus.

However, there are many more people who have Hughes syndrome who never go on to develop lupus. Hughes syndrome and lupus are both more common in women.

How is Hughes Syndrome diagnosed?

Hughes syndrome is diagnosed by blood tests, one which looks for antiphospholipid antibodies and the other is called lupus anticoagulant, which will help identify if lupus is present. Your doctor may only carry out one test. The diagnosis will depend greatly on your symptoms and past medical history.

How is Hughes Syndrome treated?

As the main symptoms of Hughes syndrome is the increased tendency of blood clots, the treatment is aimed at thinning the blood to reduce the risk. Treatment to thin the blood may be with drugs, such as aspirin. Aspirin makes the blood less sticky, as well as cutting down the chances of thrombosis and strokes.

There are also stronger blood thinners available, such as heparin or warfarin depending on how severe the condition is. If you are trying to become pregnant warfarin should not be taken as it is potentially toxic to the developing fetus.

If you are taking warfarin regular blood tests are required to ensure the drug is thinning the blood. Heparin needs to be given daily but unfortunately is only available as an injection and cannot be given long term.

If you have been diagnosed with Hughes syndrome you should limit the risk of thrombosis from other causes, for example quit smoking, keep to a healthy weight and get regular exercise.

If you believe you are at risk of Hughes Syndrome then speak to your doctor for advice and help. For further information on Hughes syndrome you can also try the following website : www.hughes-syndrome.org.