Professor Graham Hughes is a consultant rheumatologist and head of the London Lupus Centre. In 1983 Graham described the ‘antiphospholipid syndrome’ – now known as Hughes Syndrome. He is the UK’s leading lupus specialist.
Why did you choose to specialise in Rheumatology?
It was not entirely intentional. I trained and qualified at the London Hospital, but in 1969 I won a scholarship to train in America and trained under Dr Charles Christian at the Rheumatology and Lupus Centre in New York. Lupus was not well known then and it was a fabulous environment to be in.
After two years I returned to London bringing the knowledge of this very specialist subject with me. I became a consultant physician and setup Europe's first dedicated Lupus clinic at Hammersmith Hospital in 1973.
Why did you set up the London Lupus centre?
When I retired from my NHS practice in 2005 I was invited to create the Centre by John Reay who, at the time, was the CEO of the London Bridge Hospital where we are based. I am blessed because I because it is easily the best hospital I've ever worked in - truly head and shoulders above others.
The Centre has grown from strength to strength in that decade, and we now see around 400 patients a month. It is a state-of-the-art facility and it is staffed by a group of physicians, with all with a specialist interest in lupus.
Our patients come from all over the world. We will often book two appointments with new patients, five days apart, in order to run tests and return results to them quickly.
Lupus is a very difficult condition to diagnose because it is very complex and there are many different types. The disease affects mostly young women. The peak ages of 15-40, the female to male ratio is 9:1. The symptoms are very varied and include aches and pains, fatigue, skin rashes, hair loss and headaches. As these symptoms are common in the general public, the diagnosis can be delayed.
Often, we see patients who have been moved from pillar to post. It is treatable, but the crucial point is catching it early, otherwise it can damage the kidneys.
Are people becoming more aware of Lupus?
Yes, we are working to increase awareness and have seen much more recognition in recent years. I am editor of the international journal LUPUS, and within that, we have a feature called ‘Lupus Around The World’. It is fascinating to see awareness increase globally - for example, we are seeing huge number of patients with lupus in the Far East.
Many of my trainees work in Lupus Centres across the world - I call them my mafia! I am very proud of them all, continuing to make great progress in this specialist area.
One in 100 women probably have lupus. In fact, is more prevalent than Leukaemia or Multiple Sclerosis but does not receive the same level of attention.
Recently more high-profile personalities are coming forward to show that they have lupus and live with it successfully. It is no longer thought of as ‘career-shattering’. Elaine Paige has been a long been a great supporter following her diagnosis in a 1989 when there was little public knowledge of the disease.
There are more ‘celebrities’ sharing their stories which in today's world can really help our cause.
Another supporter is Julian Lennon, who is a patron of the St. Thomas’ Lupus Trust. He holds the rights to his father's song Lucy in the Sky with Diamonds which was written by John Lennon and inspired by Julian's childhood friend Lucy Vodden. Lucy died from lupus aged 46, many years after the song was released but following her death, Julian recorded a charity single to help raise awareness of the condition.
Describing Hughes Syndrome is an incredible legacy…
It was culmination of a lot of hard work from a brilliant team. In the Lupus Clinic in the 1970s, we identified a sub group of lupus patients with a clearly defined set of features - a tendency to blood clots and ‘neurological’ problems including migraines, seizures, memory loss and stroke. We found that these patients had a characteristic blood marker – an antibody which we named ‘antiphospholipid antibody’.
We soon found that the syndrome - which we named The antiphospholipid Syndrome (APS) was in fact not just seen in lupus patients but was widespread and seen in all branches of medicine. In 1990, colleagues around the world honoured the discovery by naming the syndrome ‘Hughes Syndrome’ and that media often call it sticky blood.
The wonderful thing about this disease is that is diagnosed by a blood test and treated very simply with medicines.
In pregnancy the ‘sticky blood’ syndrome can lead to placental thrombosis and miscarriage. Hughes Syndrome has had a major impact on the world of obstetrics, it being the commonest, treatable cause of recurrent miscarriage.
For patients with the seemingly unconnected problems of migraines, angina and recurrent miscarriage, the simple blood tests for Hughes Syndrome can be life changing. The Hughes Syndrome Foundation is a UK charity supporting those affected by the condition which helps raise awareness and importantly, funds for research and education.
Is there a favourite piece of advice you have ever received or been given?
Remember the first lesson in medicine: Listen to the patient!