Education, Awareness, Support

Self Help Blog

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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June 2018

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.

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May 2018

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”.

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April 2018

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?

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March 2018

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.

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February 2018

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.

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