LifestyleMemories

Lupus Research in the 80s: An interview with South London Physician, Professor Graham Hughes

By Charlotte Edwards

October is Lupus Awareness Month. Lupus is a chronic autoimmune disease in which the body’s defence system becomes overactive and attacks its own organ tissue. Common symptoms include joint pain and inflammation, skin rashes, hair loss and headaches.

It is a condition that disproportionately affects women and people from Black African, Caribbean and Asian ancestries. It is also more common in young people, between the ages of 15 and 45.

These days, Lupus is a high-profile disease, featuring in the mainstream media as celebrities like Selena Gomez and Lady Gaga share details of their diagnosis. In the UK, there are now seven Lupus Centres of Excellence: from Southampton to Manchester, and four in London.

This hasn’t always been the case. Over the past forty years or so, perceptions of Lupus as a rare, untreatable condition have shifted.

Princess Diana learning about Lupus in 1984. Professor Hughes (far right) (Picture: Professor Graham Hughes)

The career of Professor Graham Hughes, a leading specialist who practised and carried out research for many years in the south of London, has spanned this change.

Discovering his specialism under Charles Christian at the Columbia Presbyterian Hospital in New York, Professor Hughes went on to set up Europe’s first Lupus centre at the Hammersmith Hospital in 1973, followed in 1985, by the Lupus Unit at St Thomas’ Hospital.

In 1983, he described the clotting disorder known as Hughes Syndrome, prolific in Lupus patients, for which he recently received the Hamdan Award for Medical Research Excellence.

Baby parties held at St Thomas’ Hospital each year for mothers and children who came under the care of the Lupus Pregnancy Clinic (Picture: Professor Graham Hughes)

Talking to the South London Press, Professor Hughes outlined changes in treatment, saying: “In the old days, Lupus was understood quite universally to be fatal, and patients were given

massive doses of steroids which caused far more problems than the disease itself. 

“The first big improvement, has been the modern drugs that came along in the 90s – called biologics.”

The opening of the Louise Coote Lupus Unit at St Thomas’ Hospital in 1994 by Elaine Paige (second from left) (Picture: Professor Graham Hughes)

First introduced in cancer treatment, then in other areas including multiple sclerosis and rheumatoid arthritis, these agents attack the very molecules causing inflammation and damage.

“These drugs have allowed for a second advance – more conservative treatment, less and more gentle steroid doses.”

Professor Hughes also talked improvements in treatment for female patients. He said: “One of the big mysteries of Lupus is, wherever it occurs in the world, the ratio of women to men is 9:1.

“The commonest age is in their twenties and thirties, and of course that’s the childbearing age when some women have real problems with recurrent miscarriage.

Cheryl Marcus (left), who started the British lupus charity, Lupus UK, and Angie Barwick, Lupus nurse at St Thomas’ (Picture: Professor Graham Hughes)

“What we discovered back in 1983, was this group of Lupus patients suffering miscarriages had one tendency, and that was what the media called “sticky blood” – a susceptibility to clotting.”

We now call this Hughes’ Syndrome – or antiphospholipid syndrome – and it is recognised to be one of the commonest, treatable causes of recurrent miscarriage.

The disease is also more prolific in certain ethnic groups. According to the Lupus Trust, surveys in the UK suggest that “one in 750 Caucasian women – rises to a striking 1 in 250 Asian/Afro-Caribbean women.”

With his move to St Thomas’ Hospital in 1985, Professor Hughes continued to work with female Lupus patients, opening specialist lupus-in-pregnancy clinics.

Baby parties held at St Thomas’ Hospital each year for mothers and children who came under the care of the Lupus Pregnancy Clinic (Picture: Professor Graham Hughes)

In 1994, he established the Louise Coote Lupus Unit, the first “dedicated” lupus unit in Europe – and still the largest. It was named after a former patient who Professor Hughes described as “a lively young woman, loved by all in our unit – but with devastating Lupus.”

The Unit, based in Southwark, continues to provide a range of specialist services for patients with Lupus and anti-phospholipid (Hughes) syndrome and is at the forefront of research in these areas, with a connection to King’s College London.

This month, Professor Hughes is drawing attention to Lupus. He pointed us to two charities also spreading the word: LUPUS UK and the Hughes APS Trust.

On the LUPUS UK socials, you can find pictures shared by Lupus patients raising awareness with the hashtag #THISISLUPUS, and on their website, you too can get involved with a host of fun events and activities.

Pictured top: Professor Hughes (left) at St Thomas’ Hospital in 1985 with Dr Munther Khamashta (Picture: Professor Graham Hughes)

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