Education, Awareness, Support

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June 2019

In early May, I gave a talk on Hughes syndrome at the annual meeting of the Royal college of GPs, here in London. Three hundred attendees, and piles of questions.

On Saturday, 18th May, I was a guest speaker at the annual meeting of the patient’s society, Lupus UK, held this year in Exeter – two and half hours by train each way. I really do congratulate Chris Maker and his team on a packed and clearly successful meeting. I am told that the talks were filmed and recorded and that Lupus UK are hoping to make it available to their members.

Our own big meeting, on the 13th of September is filling up quickly. We are covering what I call ‘The Big Three” (Hughes syndrome, Sjogren’s syndrome and Lupus) and we have a packed programme, with TV doctor, Dr Chris Steele as our special guest (for booking, visit: www.londonlupuscentre.com).

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April 2019

Easter comes late this year. Frenetic Brexit politics – the Westminster establishment fighting to overturn the ‘popular vote’. So sad. 

Last week I gave a lecture at an ‘immuno-therapy’ meeting in Madrid. Three hundred attendees, including representatives of the Spanish patients’ APS Society. The atmosphere was fantastic. So many doctors (and patients’) wanting to learn more about our syndrome. 

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March 2019

February is the month for the Barcelona ‘Ten Topics’ meeting – an outstanding annual event – and this year was no exception.  A brilliant two day meeting, this year attracting 230 trainee doctors.

The atmosphere was wonderful – a packed auditorium and a mega volume noise level in the coffee break.  As in previous years (the Barcelona Ten Topics meeting is 21 years old this year) there was an emphasis on Lupus and Hughes syndrome, and the meeting was enlivened by a series of “pavement consults” (an idea borrowed from America I think, in which difficult cases are discussed by a small team of experts).  

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February 2019

My colleague and friend Munther Khamashta gave me a wonderful book of quotations of Dr. William Osler. Such an inspiration – a doctor who combined day to day clinical practice with teaching and clinical research.  His papers include one of the early descriptions of systemic lupus in 1895. 

One of his quotations concerns stroke – the subject of today’s ‘patient of the month’.   “The chief difficulty in deciding upon a method of treatment (of stroke) is to determine whether the apoplexy is due to haemorrhage or to thrombosis.”

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January 2019

The year 2018 ended with a whimper – mild and grey.  No snow in London thank goodness.  For me the medical highlight of the month (and the year) was the awarding of The Sheikh Hamdan Bin Rashid al Maktoum award for medical services – an international medical prize awarded by the Dubai Royal family every two years – for me an immense honour.  The prize was presented by Sheikh Hamdan in an impressive ceremony in Dubai.

It was awarded for the description of Hughes syndrome – “one of the two most important disorders discovered in the late 20thcentury” according to his Highness.

You can imagine how touched I was to be awarded this truly international honour.

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December 2018

It’s wonderful when one gets to a meeting or a conference which is both outstanding, and at the same time, somewhat outside ones own circle of expertise or experience.

So, a while ago, I found myself in a conference on metal allergies.  Organised by my good friend Dr Shideh Pouria, one of the UK’s leading experts on allergic diseases.  Pressed by Shideh to attend, (and being free on that particular Friday) I was hooked. So many lessons. How many of my more ‘difficult to diagnose’ patients attending my Lupus, Sjogren’s and Hughes Syndrome clinics have similar clinical pictures to those discussed in this meeting – the headaches, the aches and pains (and ‘fibromyalgia’), the fatigue.

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November 2018

For us, the warm late summer/autumn weather continued through into November.  The colours rival those of Maine. 

Our new education charity website (www.ghic.world), is now getting into gear.  We have been joined by Suzanna Magill, who, as Manager, will run our international network.  We welcome all articles, letters, photos and questions, both from patients and medics. 

One event, which we organised last month, was a fundraising book launch of a book by Kay Thackray, who, in my view, has written the best patients’ book on Hughes Syndrome – ‘Sticky Blood Explained’ – a practical, personal and well written view of the syndrome. 

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October 2018

Summer lingers on – even in the season of mellow fruitfulness, the temperature is still high and here, at least in Kent, the gardens are parched.

On Saturday, I gave the inaugural lecture in the Middle East Medical Congress, in the beautiful city of Beirut. This annual conference, bringing together doctors from all over the region, including Iraq and Syria, is one of my favourite medical events. The medical standard is high – indeed some of the best work in Hughes Syndrome/APS is coming out of the American Hospital in Beirut.

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August / September 2018

At last a summer to remember. August – at least here in Kent, was hot and sunny. The pleasure boats on the Thames were full. London a town of tourists.

Each month, arthritis doctors receive a magazine called “The Rheumatologist”. This popular American magazine goes out to rheumatologists round the world and reports advances in our field

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July 2018

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.

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