YouGov Survey Reveals Ignorance Of Common But Often Undiagnosed Disease, Hughes Syndrome, UK

Main Category: Immune System / Vaccines
Article Date: 05 Feb 2009 - 3:00 PDT

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A critical lack of awareness of a serious medical condition could be costing lives.

A YouGov survey has revealed that 96% of the population is unaware of Hughes Syndrome, the auto-immune disorder that affects up to 1 million people in the UK.

Professor Graham Hughes, who discovered the disease 25 years ago, called today for more recognition from the government and the medical profession of this common and serious condition.

Also known medically as antiphospholipid syndrome and more colloquially as 'sticky blood' Hughes Syndrome is an auto-immune disease which causes the blood to clot excessively and can affect any organ of the body giving rise to potentially fatal conditions.

Although often unrecognised Hughes Syndrome is common - being responsible, for example, for 1 in 5 strokes in the under 45's and 1 in 5 heart attacks in young (under 35) women. In pregnancy it is the most common, treatable cause of recurrent miscarriage.

The good news is that it can be detected with a widely available, cheap blood test and treatment can be as simple as low-dose aspirin or blood thinning drugs such as warfarin and heparin.

Says Professor Hughes "We know from patient experience that delay in diagnosis is common, with high costs to the NHS and the patient. The pity of it is that Hughes Syndrome is easily diagnosed and very treatable."

The YouGov survey supports Professor Hughes' call for testing to prevent more serious illness. Given knowledge of the symptoms of Hughes Syndrome, 68% of the sample agreed that people should automatically be tested for the condition following stroke, DVT or heart attack, and 71% said testing should be automatic following miscarriage or still birth.

Professor Hughes' new book Understanding Hughes Syndrome is intended to raise awareness amongst patients and the medical profession. In it he describes 50 case histories of Hughes Syndrome sufferers with various aspects of the condition providing an insight into the symptoms, diagnosis, and treatment of a disorder which has been described as one of the major diseases of our time.

Notes

" Professor Graham Hughes is Head of the London Lupus Centre at London Bridge Hospital

" The two key blood tests are aCL (anticardiolipin) and LA (lupus anticoagulant). The blood tests are cheap (no more than £10), relatively simple and available at most laboratories throughout the world.

" The conservative estimate of people at risk from Hughes Syndrome is 1% of the population - more than suffer from Parkinson's disease or multiple sclerosis. One study indicated that it could be 2-4%.

" Miguel Vilardell, Dean of Medicine at the University of Barcelona has said "There are two diseases of the late 20th century: AIDS and the Antiphospholipid Syndrome".

" One of the commonest symptoms of Hughes Syndrome is headache, frequently migrainous. As well as stroke and mini-stroke (transient ischaemic attacks) other symptoms include memory loss, dizziness, balance problems, and seizures.

" In pregnancy clotting of the placenta can cause miscarriage or stillbirth. At present women are not tested for Hughes Syndrome until after three consecutive miscarriages.

" The recognition and treatment of Hughes Syndrome improves the chances of preventing miscarriage from below 20% to above 80%.

" Some cases are misdiagnosed as multiple sclerosis, and patients with memory loss fear they are developing Alzheimers. If the symptoms are caused by Hughes Syndrome the conditions are treatable.

" Graham Hughes new book Understanding Hughes Syndrome is available from http://www.springer.com price £7.99.

" The Hughes Syndrome Foundation is a UK registered charity dedicated to raising awareness and funding research into Hughes Syndrome. http://www.hughes-syndrome.org

" All figures, unless otherwise stated, are from YouGov Plc. Total sample size was 2154 adults. Fieldwork was undertaken between 24th - 25th January 2009. The survey was carried out online. The figures have been weighted and are representative of all GB adults (aged 18+).

The Hughes Syndrome Foundation

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