Venus Williams sjogren’s syndrome : What is it? A World Day of activities next month is the latest attempt to raise awareness of a medical condition which affects many in northern England yet remains under-diagnosed and not well-known.
Sjögren’s syndrome affects fluid glands including those producing tears and saliva and can range from regular irritation to much more devastating results such as sight loss.
It attracted attention last September when Venus Williams dropped out of the US Open tennis championship because of its effects. Although only 31, the champion player had been struggling with stamina problems, dry eyes and mouth and swollen joints. Initial asthma treatment had no effect and then Sjögren’s was diagnosed.
Pronounced ‘showgrens’ and named after the Swedish doctor Henrik Sjögren who first described the condition in 1933, the syndrome affects an estimated 2,000,000 people in the UK, nine out of ten of them women. It is the second most common auto-immune condition after rheumatoid arthritis but one of its main problems, and the cause of the World Day and other profile-raising, is that it can be tricky to recognise initially when prompt treatment may prevent later complications.
Sjögren himself took eight years to analyse the condition and his work initially failed to earn him an academic position and was not fully recognised until a decade later, in 1943.
Michelle Harrison, of Newton Aycliffe in county Durham, is an example of delayed diagnosis, saying that she was devastated when a doctor wrote her down as a possible hypochondriac in her teens before Sjögren’s was recognised. Bright, lively and successful at GCSEs, she became depressed, lost confidence and flunked her A-levels after early symptoms of muscle pain and chronic fatigue at the age of 17.
She looked misleadingly well otherwise but it was only after emergency admission to hospital for suspected meningitis that she was referred to a rheumatologist who recognised the true cause. Harrison, who is now 40 and radiology systems manager at South Tees hospitals NHS trust in Middlesbrough, says:
He went to call in a senior colleague, and while he was out of the room I glanced at the GP’s referral notes, which suggested I might be ‘a bit of hypochondriac’. I had joint and muscle pains, severe migraines, and photo sensitivity, which led to the meningitis fears, and I came close to having a lumbar puncture. Previously my symptoms, including fatigue, were dismissed, and being dubbed an ‘attention seeker’ in those medical notes nearly scarred me for life.
Harrison’s turnaround continued after seeing Dr Ian Griffiths, a rheumatology specialist at the Freeman hospital in Newcastle who was president of the British Sjögren’s Syndrome Association. She says:
It was serendipity that I saw him. It was such a relief to prove that I wasn’t making it all up. But it took me years to get my head around it: I wondered ‘How am I going to live with this?’ I saw it as a ‘thing’ and determined not to let it beat me.
She now helps others through a British Sjögren’s Syndrome Association help group, a network whose presence will be highlighted on the World Day on 23 July. In the UK, supporters led by patron Eleanor Bron are using traditional methods to start the campaign – coffee mornings and afternoon teas under the banner Fancy a Cuppa Day.
People with problems can call a helpline 0121 478 1133 from 9 30am – 4 30pm Monday to Friday. For details of a Sjögren’s group near you, see the association’s website here or call 0121 478 0222.