Around 96% of people have no idea what Hughes Syndrome is.
Worryingly, it’s not just the public who are in the dark – it seems certain doctors are failing to diagnose it quickly enough too.
“It’s vital to raise awareness of Hughes syndrome in the medical profession so that doctors can diagnose people more quickly, and make sure their patients can receive the best treatment,” says Kate Hindle, manager at Hughes Syndrome Foundation.
Without treatment, the condition – otherwise known as Antiphospholipid Syndrome (APS) – can lead to everything from heart attacks, strokes and DVT.
So, with such potentially life-threatening dangers, why on earth do only 4% of us know about it?
A ‘new’ condition
“Hughes syndrome is relatively new, medically speaking, only being first described in 1983,” explains Hindle.
“Although this is over 30 years ago now, the pioneering doctors still had to prove that it existed for the next 10 years or so. It’s now widely recognised in obstetrics, and specialised stroke units, but we still need to raise awareness of it – as independent research shows it takes three years on average to be diagnosed.
“It’s also important to raise the profile of Hughes syndrome with the general public, so that people can be more aware of the symptoms, as well as any family history of young thrombosis or autoimmune conditions, such as lupus or thyroid disease.”
What is Hughes Syndrome?
Hughes Syndrome is also known as ‘sticky blood’ syndrome, as it’s an autoimmune disease where there’s an increased tendency for the blood to clot too quickly, both in veins and in arteries.
What does Hughes Syndrome affect?
As blood obviously flows throughout the body, Hughes Syndrome can affect any organ to varying degrees – including the brain, eyes, ears, lungs, heart, kidneys, liver, bowel, skin, nails, bones and joints. The brain is particularly susceptible, because ‘sticky blood’ can impair circulation and limit oxygen – which can result in a variety of low-grade neurological symptoms.
What are the symptoms of Hughes Syndrome?
The symptoms tend to be classified as either ‘low grade’ or ‘high grade’. The former include:
- headache and migraine
- memory problems
- dizziness and balance difficulties
- visual disturbances
- blotchy skin
The ‘high grade’ symptoms are common acute conditions which are caused by the (normally undiagnosed) condition:
- thrombosis – DVT
- strokes and mini-strokes
- heart attacks
- pulmonary embolism (blood clot on the lung)
It’s important to realise that Hughes syndrome is responsible for 1 in 6 of all strokes and heart attacks in people under 50.
That sounds worrying – should I be scared?
Scared is the wrong word. As Hindle is keen to stress, “early diagnosis and appropriate treatment can often prevent these serious complications developing” – but it does highlight how important it is to be aware of early symptoms, and to get them checked.
How is Hughes Syndrome diagnosed?
Hughes syndrome can be detected with three relatively simple blood tests.
There is no cure for Hughes Syndrome, so treatment focused on reducing the risk of developing more blood clots – this tends to be a low-dose aspirin or blood-thinning drugs such as warfarin and heparin. Patients are also encouraged to make basic lifestyle changes to prevent the risk of blood clots – and it’s the usual list: don’t smoke, eat a fruit and veg-filled, balanced, low-sugar diet, exercise regularly, and maintain a healthy weight.
How do I know if I’m likely to be at risk?
It’s thought between 1 and 4% of the population is at risk of Hughes Syndrome, which might not sounds enormously high, but to get it in perspective, that’s a higher percentage than people who suffer Parkinson’s disease or Multiple Sclerosis. The disease can affect all age groups and both sexes, but the majority of cases are in those aged between 15 and 50, and more women than men are affected.
Is that a concern?
Sadly, in pregnancy, Hughes syndrome can cause early or late miscarriage and stillbirth. In fact, it’s acknowledged as the most common, treatable form of recurrent miscarriage.
Despite this, women are currently only tested for Hughes syndrome after three consecutive miscarriages. However, once diagnosed and treated, the chances of preventing miscarriage rise from below 20% to above 80%.
More information on the condition can be found at Hughes Syndrome Foundation.
Please note that Hughes Syndrome Foundation staff are not medically trained, and the information provided does not replace information given to you by your own healthcare provider.