Sheeraz Henderson had just arrived in France on holiday when she noticed her foot was swollen. She’d travelled on the Eurostar, ‘so I wondered if it was from not moving around enough’, she says.
But the foot swelling didn’t go down and she had to swap her usual shoes for Crocs.
On her return home to Shropshire two weeks later Sheeraz, 53, went to her GP. By now her foot was swollen with a constant dull ache.
‘The GP asked me if I’d done anything to it or if I exercised a lot and had sprained it, but I said no,’ she says.
Blood tests came back positive for raised levels of inflammatory markers – ‘but nothing else was done’, says Sheeraz.
‘I was referred to a rheumatologist but there was a year’s waiting list. My foot remained swollen for more than a year and over the course of that year my skin became dry and sensitive. My hair thinned too.’
Her mouth also became so dry the skin peeled, and she developed a hoarse voice – ‘I was always having to sip water’ – as well as aches and pains in her legs and jaw.
Just before her appointment with the consultant, she was referred for physio as she was suffering badly with hip pain.
Sheeraz Henderson, 53, was diagnosed with Sjogren’s syndrome, a rare autoimmune disease where the immune system attacks the body’s moisture-producing glands
‘I was also quite fatigued making usual activities more of a challenge. I used to love walking but I felt too tired to go on long walks.’
Finally, after the year-long wait, in October 2023 Sheeraz saw a rheumatologist who ran more complex blood tests.
‘A few days later he sat me down and told me I had Sjogren’s syndrome,’ she says. ‘I was stunned.’
Sjogren’s is an autoimmune disease where the immune system attacks the glands that produce moisture in the body.
As Ben Fisher, a professor in rheumatology at the University of Birmingham, explains: ‘Patients very often get problematic dryness of the eyes and mouth; and the skin and vagina can also be affected.’
Around 30 to 40 per cent of patients also experience inflammation in the joints, causing joint pain and stiffness; in the lungs, causing a cough or difficulty breathing; and nerves, causing numbness, he says.
It’s a condition that affects mainly women. ‘A lot of autoimmune diseases have a bias towards more women than men and Sjogren’s is probably the most sex-biased autoimmune disease; it’s at least nine to ten times more common in women than in men,’ adds Professor Fisher.
This may be because some of the genes linked to autoimmune conditions are located on the X (i.e. female) chromosome – women have two X chromosomes.
Ben Fisher is a Professor in Clinical Rheumatology at the University of Birmingham. Symptoms of Sjogren’s can overlap with other conditions making it difficult to diagnose, he says
Sex hormones also influence how our immune cells function, ‘leading to a difference between men and women and at different phases of life,’ he adds.
And because Sjogren’s ‘has been much less researched compared to other autoimmune diseases, we know far fewer of the genetic risk factors for it than for diseases such as rheumatoid arthritis, for example.
‘But even then, the vast majority of Sjogren’s patients don’t have a family history of the disease and we don’t know what triggers the disease in most cases.’
And because the symptoms can be quite subtle, or overlap with other conditions, it can lead to a delayed diagnosis.
‘It’s like a jigsaw of lots of different symptoms, all of which can be quite vague on their own,’ says Professor Fisher.
‘For example, patients can get a gradual onset of dryness of the eyes and mouth, and fatigue but there are many other things that cause these symptoms such as eye conditions like blepharitis [inflammation of the eyelid] and other causes of tear loss. Fatigue is common to many chronic illnesses,’ he explains.
‘You’re putting the pieces of the jigsaw together.’
Sheeraz was eventually prescribed hydroxychloroquine, an anti-rheumatic drug, which eased her symptoms within days
Diagnosis is often based on symptoms, and blood tests for a specific antibody and/or a biopsy of the salivary glands.
‘Antibodies are produced by our immune system to help clear bacteria and viruses but in some people antibodies bind to proteins in our own body – several autoantibodies are seen in Sjogren’s.
But a doctor needs to recognise the symptoms and the possibility of Sjogren’s to even order these extra tests. He adds: ‘Even awareness of Sjogren’s itself may be low because it is less common than some other autoimmune diseases and because of the competing pressures and demands in primary care.’
Delayed diagnosis can cause long-term complications. Over time, left untreated, Sjogren’s can lead to gland damage and a progressive loss of tears and saliva (which in turn can lead to dental decay, for example).
One in 20 patients may go on to develop a type of blood cell cancer known as lymphoma due to uncontrolled inflammation.
‘Research conducted by the Sjogren’s Foundation in the US found the average time it used to take people to be diagnosed was around six years. This has gone down to just under three years, but there are of course still many people who wait a long time for a diagnosis.’
Once Sheeraz was diagnosed, her consultant gave her eye drops for the dry eyes and a saliva spray for dry mouth.
Each symptom is treated separately, explains Professor Fisher: ‘There aren’t any therapies that can be used to control the way that Sjogren’s affects the whole body, so in the majority of people it’s really about using symptomatic treatments.
Sheeraz is now able to manage the incurable condition with medication and support from charity Sjogren’s UK
‘For example, artificial saliva for dry mouth, which is often not that effective, and artificial tears which don’t work for everyone and some people need to use them every hour to try and obtain relief, which is not convenient or pleasant.’
Immunosuppressants and drugs such as hydroxychloroquine (which regulates rather than suppresses the immune system) are used when Sjogren’s affects other organs such as the joints or lungs.
Sheeraz was prescribed hydroxychloroquine and ‘within days I could walk faster and for longer, it was amazing’, she says.
Professor Fisher says there is hope of new drugs on the horizon: ‘There are a lot of clinical trials going on, so we are in a very different place than we were even ten years ago.
‘We have four or five drugs globally that are in late-stage clinical trials and the results of these may be available in the next one to three years.
‘These drugs are targeted at suppressing parts of the immune system that seem to be overactive in Sjogren’s,’ he explains.
‘Although they are mainly focused on treating organ involvement outside the moisture-producing glands, the hope is that they will also improve the symptoms and signs of dryness as well as fatigue.
While there is no cure for the condition, Sheeraz is managing it thanks to her medication and support from the charity Sjogren’s UK, through which she’s met others with the condition.
‘I am relieved to have a diagnosis but do wish more in the medical profession were aware of it. Hopefully my story will help someone else.’
Visit The British Sjögren’s Syndrome Association for more information: sjogrensuk.org
