The Patients’ Meeting will be held on Friday, 21st September 2018 (from 1.30 p.m. to 5.00 p.m.), at the Hilton London Tower Bridge. The programme and tickets are available on: https://www.eventbrite.co.uk/e/patients-meetinglupus-hughes-syndrome-a-modern-epidemic-tickets-46536304339. We plan to bring along booklets etc., and certainly look forward to it.
On the home front, our new educational charity is now finally getting into full shape.
As part of our ‘introductory’ events, we are holding a ‘Patients’ Meeting on Friday, 21st September 2018 in the London Hilton Tower Bridge (opposite London Bridge Station), and topics will include Lupus and Hughes Syndrome. For more details go to: http://bit.ly/2u02LYb
The meeting is being run in collaboration with Lupus UK and is being sponsored by London Bridge Hospital, and the afternoon will consist of short talks by both patients and doctors, followed by a ‘Question and Answer’ session.
I had been taking part in the international immunology conference, organised by Prof Yehuda Shoenfeld, held every 2 years in a different European City – this year in glorious Lisbon. Of all the meetings I have been fortunate in attending, this is firmly my favourite. The reason is that this conference covers such a broad spectrum of topics. It is truly a workshop, in which most of us learn so much, I certainly do. The breath of topics is enormous: this year’s meeting for example covered Multiple Sclerosis, Autism, Lupus, Hughes Syndrome, new treatments for Rheumatoid Arthritis, basic studies on autoimmunity… and food sensitivity. It is this last topic which is featured in this month’s “patient of the month”.
Today’s patient of the month touches on a rather common problem in our clinic – is the diagnosis lupus, or is it Hughes Syndrome? Or, as is often the case, is it a mixture of both?
Our new website (ghic.world) has now come on stream. Free to subscribers, the website aims to link doctors and patients dealing with lupus and Hughes Syndrome in a global network.
Earlier this month, I took part in the 20th ‘Ten Topics in Rheumatology’ meeting in Barcelona. Over these past 2 decades, the ‘Ten Topics London’ and ‘Ten Topics Barcelona’ meetings have nourished a very strong link between our unit at St Thomas’ Hospital (and now at London Bridge Hospital) and a number of medical and research centres in Spain.
January 2018 is proving a dark, rather depressing start to the year. A number of our team have been hit by the ‘flu’ epidemic sweeping the country. Added to which, the sun has made only rare appearances so far.
In October, I was a guest speaker in Porto, Portugal. It was at an international immunology meeting, and one of the 2 days was devoted to Hughes syndrome/Antiphospholipid syndrome (APS).
One of the recurring themes of history-taking in patients with Hughes Syndrome – or even in those with the suspected diagnosis – is the difficulties so many patients face - tortuous journeys towards a final diagnosis.