Temperature – two degrees higher than the South Pole! So shouted the newspaper headlines. More snow and railway chaos! As a nation we are obsessed with the weather – not surprisingly perhaps. My thanks (and congratulations) to all the Lupus team at London Bridge Hospital – all of whom came in by train – and all of whom made it! Every day.
This year, we have plans for a series of GP seminars on both Hughes Syndrome and Lupus, as well as postgraduate meetings (notably the annual Ten Topics meeting on 1st and 2nd July).
The national Patients’ Forum is planned for May at St Thomas.
I was one of the overseas speakers in the annual medical meeting in Portugal to lecture on Hughes Syndrome.
For me, the visit was very thought provoking. The reason? – the organisers had given me a rather unusual topic – ‘non-thrombotic aspects of the antiphospholipid (Hughes) syndrome which respond to anticoagulation’.
In other words, we know that medicine such as aspirin, heparin and warfarin protect against clots – but could they possibly have other beneficial effects?
The answer is clearly a ‘yes’. And in my talk I chose ten illustrative histories taken from patients I have seen in the London Lupus Centre at London Bridge Hospital.
Rather than describing them now, I will discuss ten examples in more detail in later blogs.
I have listed these examples partly to demonstrate the variety of clinical faces of the syndrome. Some have already been described in previous blogs and in the book ‘Understanding Hughes Syndrome’. Others will be described in this and future monthly blogs.
Patient of the Month
Mrs KT, a 48 year old housewife had had a long medical history. From the age of fourteen, she had suffered regular migraines, double vision, pins and needles (thought at first to be early MS), thyroid problems and poor memory.
One day in 1999, she suddenly had a heart attack. Taken into intensive care, her treatment included twice daily heparin injections and a daily aspirin.
“To my amazement I could read. My eyes were totally clear”.
Later that year, she started to develop angina.
Angiograms showed clear coronaries.
At this stage one of the blood tests showed the words ‘lupus anticoagulant positive’, but no medical checks were made. The angina continued.
Mrs KT did what so many now do – she surfed the web and came up with details of Hughes Syndrome. The rest is history.
What is this patient teaching us?
Some of you may already have spotted the clues. The patient KT is Kay Thackray whose book ‘Sticky Blood Explained’ is, in my view, the best book ever written about Hughes Syndrome.
Kay went on to lifelong warfarin, with a return to a full, and angina-free life. Her book provides a clear understanding of the complexity of the syndrome, and what it can mean to have a complicated disease (which might even have television’s ‘Dr House’ scratching his head).
One of Mrs KT’s symptoms was angina, leading to a possible heart attack. It is easy to see why, amongst all the other clinical problems, milder cases of angina could be overlooked.
But it is my strong belief that angina is an important clinical feature – indeed an under-recognised feature of some cases of Hughes Syndrome. And a symptom which can be relieved by anticoagulants.
It has often seemed to me that while neurological (brain) complications of Hughes Syndrome are becoming better recognised, the heart features have lagged behind. Hopefully, that is changing.
I predict that in the next few years, antiphospholipid blood tests (simple and cheap) will become part of the routine investigation of any young (eg 50 or less) patient with angina or suspected heart attack. Potentially so treatable.
Professor Graham R V Hughes MD FRCP