Woman’s Holiday Foot Swelling Leads to Sjogren’s Syndrome Diagnosis
Sheeraz Henderson was enjoying a vacation in France when she became aware of unusual swelling in her foot. Having journeyed via the Eurostar, the 53-year-old initially considered, “Could this be due to insufficient movement during the trip?”
However, the edema persisted, compelling her to replace her regular footwear with Crocs.
Upon returning to her Shropshire home two weeks later, Sheeraz, then 53, consulted her general practitioner. By this time, her foot was noticeably inflamed and accompanied by a persistent, dull ache.
“The doctor inquired if I had injured it or engaged in strenuous exercise that might have caused a sprain, but I hadn’t,” she recounts.
Blood tests indicated elevated levels of inflammatory markers, yet “no further action was taken at that stage,” Sheeraz states.
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“I received a referral to a rheumatologist, but the waiting period was a year. My foot remained swollen for over a year, and throughout that period, my skin became dry and sensitive. I also experienced hair thinning.”
Additionally, her mouth became excessively dry, leading to skin peeling, and she developed a hoarse voice. “I constantly needed to drink water,” she recalls, alongside experiencing aches and pains in her legs and jaw.
Shortly before her scheduled specialist appointment, she was referred for physiotherapy due to severe hip discomfort.
Sheeraz Henderson, 53, received a diagnosis of Sjogren’s syndrome, a rare autoimmune illness where the body’s moisture-producing glands are targeted by the immune system.
“I also felt significantly fatigued, making everyday tasks more challenging. I previously enjoyed walking, but I lacked the energy for extended walks.”
Finally, after a year’s anticipation, Sheeraz consulted a rheumatologist in October 2023, who conducted more extensive blood tests.
“A few days later, he informed me that I had Sjogren’s syndrome,” she says. “I was shocked.”
Understanding Sjogren’s Syndrome
Sjogren’s syndrome is an autoimmune condition where the body’s defense system mistakenly attacks the glands responsible for producing moisture.
Professor Ben Fisher, a rheumatology expert at the University of Birmingham, clarifies, “Patients frequently experience significant dryness of the eyes and mouth; and the skin and vagina can also be impacted.”
Approximately 30 to 40 percent of individuals also develop inflammation in various areas, leading to:
- Joint pain and stiffness
- Coughing or breathing difficulties due to lung involvement
- Numbness caused by nerve issues
Professor Fisher emphasizes that Sjogren’s predominantly affects women. “Autoimmune diseases often show a predisposition towards women more than men, and Sjogren’s exhibits perhaps the strongest gender bias. It is at least nine to ten times more prevalent in women compared to men.”
Professor Ben Fisher, a Clinical Rheumatology expert at the University of Birmingham, notes that Sjogren’s symptoms can resemble other conditions, complicating diagnosis.
He suggests this disparity might be due to the location of some autoimmune-related genes on the X chromosome, of which women possess two.
Furthermore, sex hormones influence immune cell function, “causing variations between men and women and across different life stages,” he adds.
Research into Sjogren’s is less extensive than other autoimmune disorders, meaning “we have less knowledge of the genetic risk factors compared to conditions like rheumatoid arthritis.”
“Nevertheless, most Sjogren’s patients lack a family history of the disease, and the triggers remain unknown in the majority of cases.”
Symptoms and Diagnostic Challenges
The subtle nature and symptom overlap with other conditions can delay diagnosis.
Professor Fisher describes it as “a complex puzzle of diverse symptoms, each potentially vague on its own.”
“For instance, patients might gradually develop dry eyes and mouth, along with fatigue. However, numerous other factors can cause these symptoms, such as eye conditions like blepharitis and various reasons for tear deficiency. Fatigue is also a common symptom in many chronic illnesses,” he explains.
“It’s about piecing together the puzzle.”
Sheeraz received a prescription for hydroxychloroquine, an anti-rheumatic medication, which alleviated her symptoms within days.
Sheeraz currently manages the incurable condition through medication and support from Sjogren’s UK.
Diagnosis and Management of Sjogren’s Syndrome
Diagnosis typically relies on symptom evaluation and blood tests for specific antibodies, and sometimes a salivary gland biopsy.
“Antibodies are generated by our immune system to combat bacteria and viruses. However, in certain individuals, these antibodies mistakenly target proteins within their own body; several autoantibodies are observed in Sjogren’s.”
Professor Fisher stresses the necessity for doctors to recognize Sjogren’s as a potential diagnosis to initiate appropriate testing. “Even awareness of Sjogren’s might be limited due to its lower prevalence compared to other autoimmune diseases, compounded by the multiple demands in primary care.”
Delayed diagnosis has the potential for long-term complications. Untreated Sjogren’s may progressively damage glands, leading to reduced tear and saliva production, which can result in issues like dental decay.
Approximately one in twenty patients may develop lymphoma, a blood cell cancer, due to persistent inflammation.
“Research from the Sjogren’s Foundation in the US indicated that the average diagnosis time was previously around six years. This has decreased to just under three years, but many individuals still experience lengthy waits for a diagnosis.”
Post-diagnosis, Sheeraz’s consultant prescribed eye drops for dry eyes and a saliva substitute for dry mouth.
Professor Fisher explains that treatment is symptom-specific: “There are no universal therapies to manage Sjogren’s systemically. For most, treatment focuses on alleviating individual symptoms.”
“For example, artificial saliva is used for dry mouth, often with limited effectiveness, and artificial tears, which may not work for everyone and can require hourly application for relief, posing inconvenience.”
Immunosuppressants and medications like hydroxychloroquine (which modulates, rather than suppresses, the immune system) are utilized when Sjogren’s affects organs like joints or lungs.
Sheeraz received hydroxychloroquine and recounts, “Within days, my walking speed and endurance improved remarkably.”
Hope and Support for Sjogren’s Patients
Professor Fisher expresses optimism regarding emerging treatments. “Numerous clinical trials are underway, marking significant progress compared to a decade ago.”
“Globally, four or five drugs are in late-stage trials, with results anticipated within one to three years.”
“These drugs are designed to target overactive components of the immune system in Sjogren’s,” he clarifies.
“While primarily aimed at treating organ involvement beyond moisture-producing glands, the hope is they will also alleviate dryness symptoms and fatigue.”
Although Sjogren’s remains incurable, Sheeraz effectively manages her condition with medication and the support of Sjogren’s UK, where she connects with others affected by the condition.
“I am relieved to have a diagnosis and hope for greater medical awareness of Sjogren’s. Sharing my experience may assist others.”
For further details, visit Sjogren’s UK: sjogrensuk.org