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A sponsored walk to raise awareness and funds for Hughes Syndrome (HS) is taking place in London next month.
The London Bridges walk on September 3 is one of a string of events the Hughes Syndrome Foundation (HSF) has organised for HS Awareness Week, from September 3 to September 10.
The foundation, based at St Thomas' Hospital in London, is the centre for research into the illness.
The syndrome is named after Dr Graham Hughes who first identified the autoimmune condition in 1983.
He named it antiphospholipid syndrome (APS). It is also known more commonly as sticky blood, as APS causes blood to clot easily.
APS cause antibodies which normally fight disease and infection to attack tissues in the body.
An antibodies test can reveal whether someone has APS by showing their levels of antiphospholipid antibodies. It is not thought they are present at birth but believed to be triggered by illness and often pregnancy.
Symptoms include migranes, dizziness and memory loss but typically APS is not identified until a serious problem occurs.
Figures show one in five people under 45 who have had a stroke have antiphospholipid antibodies present in their bloodstream.
With early diagnosis and blood thinning treatments such as aspirin or warfarin, potentially fatal dangers such as heart attacks, deep vein thrombosis and strokes could be prevented.
Yvonne Wren, an NHS physiotherapist, is one HS sufferer taking part in the HSF sponsored walk.
She said: "I was diagnosed with HS in April last year but had symptoms such as memory issues and fatigue without knowing why for many years.
"I hope the walk will help people to recognise HS as it is currently under diagnosed and acknowledged.
"I also hope to raise some money for research into the condition as it can only progress with further funding."
Yvonne has been in situations where she has to battle with medical staff about her International Normalised Ratio (INR) - the clotting rate for blood - because they did not understand the condition. Once when ill in an ambulance she had to explain to paramedics what APS was.
By working with the warfarin clinic at Lewisham Hospital, Yvonne is now able to self-test her INR and self- medicate, but equipment is expensive.
She said: "Hughes is where diabetes was 30 years ago.
"I'd like to think as it becomes more well-known medication and facilities will be readily available and more professionals will recognise the condition and its symptoms."
For more information and to sponsor the walk, visit hughes-syndrome.org