In early May, I gave a talk on Hughes syndrome at the annual meeting of the Royal college of GPs, here in London. Three…
Hughes (Antiphospholipid) Syndrome, also known as "sticky blood", can have profound implications for patients causing miscarriages, strokes and heart attacks.
GHIC has two aims:
Many patients tell stories of slow diagnosis or a tortuous route to the correct treatment. And yet, it is easily diagnosed and potentially very treatable.
Prof Graham Hughes, famous for his pioneering work in Lupus, first reported on a new syndrome in 1983 when he described the clinical manifestations of the condition, including the tendency to thrombosis and recurring pregnancy loss. His descriptions also included many of the other manifestations of the disease. Prof Hughes and his colleagues also set up the first assays for anticardiolipin antibodies and heralded the first international conference, which is a regular fixture in the medical calendar to this day.
As one in five Lupus patients also have Hughes Syndrome, and the two diseases share many manifestations, GHIC has also included Lupus information on this website.
These diseases have no boundaries, affecting patients throughout the world. For this reason our charity sought the help of an international team of expert doctors, world-renowned leaders in our field, to join us globally, to improve and share knowledge and treatment both with their own patients as well as with their own links with local patient and national patient groups and societies. We are very pleased to have over 78 experts from 36 countries in the GHIC team, and we aim to add to that number in the future.
So, if you or a friend or relative is far away from you, we hope that we can shorten the distance. We hope our charity brings together patients and doctors, relatives and friends to highlight what we know of these conditions to help improve the lives of all of those affected by them.
In the world of Lupus and Antiphospholipid/Hughes Syndrome, there has, over the years been an enormous amount of international collaboration, both in research and in education.
The main aim of this charity, through its website, is to further improve our co-operation not only amongst the medical world, but also with our patients.
In recruiting our international team of experts, we hope that we can share their knowledge, both with their individual patients as well as with their local and national patient groups and societies.