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No 1131517
Hughes Syndrome - also known as 'sticky blood' syndrome
Antiphospholipid syndrome (APS) was identified in 1983. In the 1990s it was renamed Hughes' Syndrome after the doctor whose work led to the identification of the condition. Those with Hughes' syndrome have an increased tendency to form clots in blood vessels. This can cause a range of possible symptoms such as:
- Pins and needles.
- Balance disorders.
- Giddiness.
- Visual disturbances.
Hughes' syndrome can be diagnosed by blood tests, and is treatable using blood-thinning
medications.
An estimated 150,000 people in Britain suffer from the syndrome, first reported by Graham Hughes in the British Medical Journal in 1983.
Tell - Tale signs of Hughes Syndrome
People with Hughes Syndrome have abnormally thick or sticky blood, which is prone to clotting. The blood often lacks oxygen, which prevents the brain from functioning properly. It is not known why people develop it, but illness or surgery are possible triggers.
Hughes Syndrome affects about one in five hundred and accounts for one in five recurrent
miscarriages, as well as one in five strokes and cases of deep vein thrombosis in
young people. Symptoms can include abnormal movements, memory loss, seizures, angina,
blotchy skin and headaches. It is treated with blood-
- Aspirin
- Heparin
- Warfarin.
MS
For more than two decades, John Simper was resigned to a slow and painful death from
Multiple Sclerosis. Unable to work or drive, plagued by recurrent headaches, bouts
of confusion, short-term memory loss and weakness in his limbs, he feared that he
would end up paralysed and in a wheelchair. Today he feels Mentally and Physically
stronger than he has in years, after being told that MS was almost certainly misdiagnosed.
Instead he has an illness that can be treated with an Aspirin a day. He is one of
many who may have had MS, the progressive disease of the nervous system, misdiagnosed.
At least 5 per cent of those told that they have MS are believed instead to have
Hughes Syndrome, which results in the blood becoming thick and sticky and liable
to clot dangerously. Some patients in whom MS was diagnosed have experienced seemingly
miraculous recoveries on learning the true cause of their illness, in some cases
after decades of ignorance. Paralysed patients have regained the ability to walk
and others have overcome debilitation, headaches, confusion and short-term memory
loss with treatments involving blood-thinning drugs such as Aspirin and Warfarin.
Many of the symptoms are similar to those of a neurological condition such as MS. While it is not suggested that all MS people may have Hughes Syndrome, the question to be asked is this “it requires a simple and cheap test to ascertain whether it is Hughes Syndrome or MS, could it not be an automatic requirement when one is diagnosed with MS?
Hughes syndrome has been confirmed as the cause of one in five recurrent miscarriages, one in five strokes in younger people and one in five deep vein thromboses.
Yet Dr Hughes, now a professor at the London Lupus Centre, says that few GP’s are
alert to the condition and lives are still being ruined because simple tests are
not offered as a matter of routine. “It is still totally under-
“The indications of MS and Hughes Syndrome are extremely similar, even down to the MRI scans,” Professor Hughes said. “They can be extremely difficult to diagnose, but a simple blood test can make all the difference.” He recommends that two blood tests be offered routinely to any MS patient who has suffered recurrent headaches, problems with clots, a family history of Auto Immune diseases, or who has had recurrent miscarriages.
A survey at the Lupus Centre indicated as many as 32% of patients suffering from Hughes Syndrome had been diagnosed wrongly or treated for MS.
Mr Simper, 60, from Ipswich, a former motorcycle racer and mechanic, went to his GP after reading about Hughes Syndrome in a magazine. Recognising his symptoms in the article, he asked his GP for extra tests. They showed that he had Hughes. He is campaigning to increase awareness of the condition.
“I’ve got used to the idea of MS over the last 26 years. I’ve always been someone who wants what I want when I want it and I have not let my condition get in the way of that,” he said. “But people are needlessly suffering because they don’t know the truth about their illnesses, and the Government has to take notice of that.”
Hazel Edwards, 48, a mother of two from Wrexham, North Wales, was paralysed from
the neck down and received no benefit from Chemotherapy and Intravenous Steroids
after MS was diagnosed in 2001. She can now walk again, after a diagnosis from Dr
Hughes. “As soon as I started Warfarin, my memory improved and I found I could walk,”
she said. “Professor Hughes and his team gave me back my life.” She first suffered
repeated miscarriages, memory loss, confusion and a loss of co-
The Department of Health was not aware of any evidence that population screening would be beneficial.!
Self diagnosis does not work, you may not have this problem. Always consult a health professional.
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