Early diagnosis saves lives
Founded in 2001, the charity was formerly called the Hughes Syndrome Foundation in honour of Professor Graham Hughes who led the London team that first described the condition in 1983.
Professor Hughes trained at the London Hospital and in New York. In 1971 he set up a lupus clinic at Hammersmith and later Europe’s first ‘dedicated’ lupus clinic at St Thomas’ Hospital, London. He is an internationally renowned rheumatologist and has earned the reputation of being the ‘father of lupus’.
It was while working in Hammersmith in the 1970s that Professor Hughes and his team started the research that led to the discovery of a new autoimmune disorder—the antiphospholipid syndrome (APS), sometimes known as Hughes syndrome or, more colloquially, as sticky blood.
In 1983, the Lancet published a paper describing what was initially called the ‘anticardiolipin syndrome’; this name was changed to the antiphospholipid syndrome at the first meeting of the British Society for Rheumatology in 1984.
Since this time, no-one has done more to advance the understanding of APS than Professor Graham Hughes. He has worked tirelessly to raise awareness of the symptoms, consequences and treatment of the disorder, always advocating that doctors should ‘listen to their patients’.
APS has been described as ‘one of the most important diseases of our time’ and, in 1990, Dr Aziz Gharavi, Dr Nigel Harris, Dr Graham Hughes and others received the ILAR Ciba-Geigy award for their work in defining the antiphospholipid syndrome.
The trustees decided to change the name of the charity in 2016 to APS Support UK to reflect the fact that medical practitioners now almost universally refer to Hughes syndrome as the antiphospholipid syndrome (APS). It was agreed that this was in the best interest of all patients.
Since patients are now given a diagnosis of APS rather than Hughes syndrome, it became crucial to identify the charity in a way that both patients and medical practitioners can readily recognise.
APS Support UK is the only UK registered charity dedicated to supporting anyone affected by APS.
We aim to achieve earlier diagnosis and the best possible treatment for patients by:
APS Support UK is a small charity that punches well above its weight but, thanks to all our supporters and volunteers, we have achieved a lot so far and will endeavour to do all we can to help those affected by this disorder
APS Support UK's mission is to save and improve the lives of patients with antiphospholipid syndrome by achieving earlier diagnosis and the best possible treatment.
APS Support UK is comprised of patrons, trustees, medical advisors and the management team.
© 2017 APS Support UK (trading name of the Hughes Syndrome Foundation). Registered Charity Number 1138116. A company limited by guarantee registered in England 7268671.