Venus will help us get a grip of syndrome

Tennis legend Venus Williams
Tennis legend Venus Williams
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She had the world’s media struggling with its shorthand as she revealed, quite unexpectedly, that she was suffering from Sjögren’s Syndrome and was pulling out of the US Open.

Reporters attempted to scrawl down the term – “shoh-grinz” – repeating it over and over it in their heads so as not to forget its pronunciation, while a look of bewilderment fell upon the faces of camera crews, who, like most people, had never heard of the condition tennis legend Venus Williams was talking about.

“Among the general public, Sjögren’s Syndrome is almost unheard of,” says Dr Helen Harris of the Edinburgh Clinic, in Colinton Road.

“In the medical profession there is a very poor awareness too.”

For most people, last week’s announcement by Williams that the autoimmune condition – which affects the production of tears and saliva – was forcing her to pull out of the high-profile competition, was probably the first time they had heard of the disease.

But experts believe it may be far more common than any of us think, with many people – including GPs – putting its primary symptoms of dry eyes and a dry mouth down to other conditions instead.

Sjögren’s also causes fatigue and joint pain, but relatively little is known about the syndrome, named after the Swedish ophthalmologist Henrik Sjögren who first described it.

In fact, Dr Harris, right, a consultant rheumatologist, is one of only a handful of medics across the country who has made it her business to know and is now part of a UK-wide drive, led by experts at Newcastle University, to list every sufferer on a register in a bid to find out more about the condition and its possible treatments.

“When someone is diagnosed with Sjögren’s Syndrome they tend to look at you with wonderment,” says Dr Harris, who lives in Cramond.

“Is that bad or good, they ask. Of course, we try to reassure them as it is not life-threatening.

“Unfortunately, for the majority of people it does reduce their quality of life.”

Living with Sjögren’s Syndrome is certainly far from pleasant. Sufferers will experience extreme dry eyes and mouths, many of them unable to swallow even the smallest of portions without a drink.

Others will find themselves battling unbearable fatigue, while many more – including Venus Williams – will experience joint pain.

The condition is an auto-immune disease whereby immune cells attack the glands that produce saliva and tears, which are vital for the body to function properly.

“People often go to their dentist first when they are suffering from a dry mouth,” says Dr Harris. “Sjögren’s can cause a lot of oral health problems, including inflammation, gum disease and loose teeth as well.

“Unfortunately, people often end up having their teeth extracted before there is a full understanding of what is going on.

“Some dentists do have an awareness of what Sjögren’s is, but we could do with raising that further with them.”

It is thought that many people with Sjögren’s Syndrome do not know they have it and may put off dealing with the symptoms for as long as ten years before a diagnosis is made.

“If you cannot eat a piece of dry bread without a drink, you probably have a dry mouth,” explains Dr Harris, who also works with NHS Fife.

“Some people don’t realise how dry their mouths are. The tests for Sjögren’s are very simple, though, as we just ask people to spit as much as they can for 15 minutes.

“We can measure for the condition as easily as that.”

When it comes to dry eyes, Dr Harris describes living with Sjögren’s as similar to “having car window wipers on without any rain”.

The simple process of blinking can cause agony for sufferers and may also damage their eyes and cause permanent scarring.

But while there is no known cure for Sjögren’s Syndrome as yet, there are treatments for patients to help ease the trouble of living with the condition.

Eye drops can be taken, as can thicker gels, and patients can even have small “plugs” put in their tear ducts to stop fluid in the eye from draining away, and therefore keeping the area moist.

Solutions to deal with dry mouths are less common as there are very few products on the market that can mimic saliva. There are tablets available to maximise the production of saliva, but the side affects can be excessive sweating, prompting many people to stop using them. Some patients use a medicated mouthwash, which has proved to help.

Sufferers of Sjögren’s Syndrome are always encouraged to look after their oral health, as they are at risk of infection due to a shortage of saliva in their mouth, by cleaning their teeth frequently and making regular trips to the dentist.

Medics are currently planning to trial the use of the drug Rituximab to treat Sjögren’s. It is used in cases of rheumatology and may be able to lower the immune system and therefore prevent it attacking the body.

“This, and also developing a register, means there is great hope for research,” says Dr Harris.

“It is also great that Venus Williams made the decision to talk about the condition as it will help to drive research forward.

“I have a great respect for her performing at the level she has while having been diagnosed.

“I also thank her for mentioning the condition as we desperately need to inform the public of it.

“She has been brave to be the person to bring Sjögren’s Syndrome to the headlines.”

catherine.salmond@edinburghnews.com