Hughes syndrome - sometimes known as antiphospholipid syndrome - is a poorly understood condition that can cause a wide range of symptoms. The most common symptoms of Hughes syndrome are:
- blood clots within the veins and arteries, and
- problems with pregnancy, such as recurring miscarriages.
Hughes syndrome is an autoimmune condition
Hughes syndrome is an autoimmune condition, which is a condition where the immune system attacks healthy tissue.
In Hughes syndrome, the immune system produces abnormal antibodies called antiphospholipid antibodies, which attack proteins and fats in the blood, including an important type of fat called phospholipid.
It is thought that these fats and proteins play an important role in keeping the blood at the right consistency. If the fats and proteins are attacked, the blood becomes abnormally ‘sticky’. This is why people with Hughes syndrome have an increased risk of getting blood clots.
The blood clots can develop anywhere in the body, and trigger a number of potentially serious conditions such as:
Blood clots can also adversely affect the development of an unborn baby during pregnancy, leading to miscarriages or premature births.
Types of Hughes syndrome
There are two main types of Hughes syndrome:
- primary Hughes syndrome - where the condition develops in isolation and is unrelated to any other condition, and
- secondary Hughes syndrome - where the condition develops in combination with another autoimmune condition, the most common of which is lupus.
How common is Hughes syndrome?
There is a lack of good quality evidence to estimate exactly how many people in England are affected by Hughes syndrome.
Studies have found that an estimated 5% of people have the antiphospholipid antibodies, but most of these people do not develop any symptoms. The reasons for this are unclear.
There is evidence that Hughes syndrome is responsible for:
- 1-5 cases of deep vein thrombosis (DVT),
- 1-5 cases of recurrent miscarriage (three or more), and
- 1-5 cases of stroke in people under 45 years of age.
Based on the information above, the Hughes Syndrome Foundation, which is the leading charity for people with Hughes syndrome, estimates that as many as 1% of people in England may have the condition.
The symptoms of Hughes syndrome usually first develop between 18-40 years of age, although cases have been recorded in people of all age, including children and babies.
The causes of Hughes syndrome are unknown, but like other autoimmune conditions, it is thought that both genetic and environmental factors may be responsible.
There is currently no cure for Hughes syndrome. Treatment involves using anticoagulant medicines (‘blood thinning’ medicines), such as warfarin, to prevent blood clots.
Outlook
Despite being a potentially life-threatening condition, once treatment begins the outlook for Hughes syndrome is generally good. Most people with the condition respond well to anticoagulants and are able to lead normal, healthy lives.
Anticoagulants can also been used to help improve the outcomes of pregnancy, and an estimated 75-80% of women, upon being treated, will have a successful pregnancy.
Unfortunately, a small number of people with Hughes syndrome continue to experience blood clots despite having aggressive treatment.
