For Lakshmi (name changed), a 40-year-old from Chennai, the journey to her Sjögren’s disease diagnosis was fraught with confusion and frustration. “For years, I dealt with unexplained joint pain, dry eyes, and difficulty swallowing. Every doctor I visited seemed to treat one symptom but never the whole problem. It wasn’t until a rheumatologist connected the dots that I finally had an answer,” she says.
Lakshmi’s experience is representative of the challenges faced by countless individuals in India grappling with this autoimmune condition.
Sjögren’s disease is an under-recognised autoimmune condition that often remains undiagnosed for years. It is a chronic disorder in which the immune system mistakenly targets the body’s moisture-producing glands, leading to a wide range of symptoms that extend far beyond the hallmark dry eyes and mouth.
Patients with Sjögren’s frequently report a gritty or sandy feeling in their eyes, which can worsen with prolonged screen use or exposure to air conditioning. Dry mouth, another common symptom, may cause difficulty in swallowing, speaking, and increased dental problems like cavities. Beyond these, the disease can affect multiple systems in the body, resulting in joint pain, severe fatigue, recurrent salivary gland swelling, and complications involving the lungs, kidneys, and nervous system. Skin dryness, a chronic cough, and gastrointestinal discomfort further add to the burden of this disease.
Pankti Mehta, clinical immunologist and rheumatologist, currently a clinical research fellow at the University of Toronto, offers insight into the condition’s prevalence and presentation in India. “While global estimates suggest that Sjögren’s affects 1 in 1,000 people, we lack precise data for India. What we do know is that it is roughly 10 times more common in women than in men and usually manifests in the 30s and 40s, although it can appear at any age, even in children,” she says.
Dr. Mehta describes symptoms that patients should be aware of. “The most common complaints are dry eyes and dry mouth, which can severely impact quality of life. Dry eyes may feel gritty, especially on awakening and during prolonged screen use, while dry mouth can lead to difficulty in swallowing and a significantly increased risk of dental problems. Beyond this, Sjögren’s can present with joint pain, fatigue, and swelling in the salivary glands, making it a complex, multisystem disease,” she explains.
The condition’s complexity often leads to delays in diagnosis. “Awareness about Sjögren’s is alarmingly low, even among healthcare professionals. Patients may visit several specialists over years before receiving a correct diagnosis,” Dr. Mehta notes. Treatment involves managing dryness with salivary stimulants and substitutes, and lifestyle adjustments. For systemic symptoms, immunosuppressive medications are used. “It’s important to emphasize that hormone therapy has no role in Sjögren’s treatment,” she adds.
Dry eyes are a hallmark of Sjögren’s, and the impact on patients’ vision is profound. Praveen Kumar Winsley from Aravind Eye Hospital, Madurai, highlights the challenges. “Sjögren’s could lead to corneal damage due to severe dryness. Left untreated, this can lead to complications requiring specialised care, such as bandage contact lenses or even surgical interventions,” he explains.
Dr. Winsely stresses the importance of lifestyle adjustments. “Patients need to avoid triggers like air conditioning and excessive screen time. Sunglasses with UV protection and frequent use of gel-based lubricating drops can make a significant difference,” he advises.
Kirtida Oza, founder of Sjögren’s India, a patient volunteer organisation, has been instrumental in creating awareness and advocating for patient-centric care. Diagnosed in 2006, Ms. Oza turned her personal journey into a mission to connect patients and push for improved standards of care. “When I was first diagnosed, I felt completely alone. Nobody seemed to understand what I was going through,” she recalls.
Her advocacy highlights a crucial gap in the way Sjögren’s disease is managed in India. A recent study conducted by Ms. Oza and her team found a significant disparity between what patients perceive as care priorities and what doctors focus on during treatment. “Physicians often prioritise major organ damage, which is, of course, critical,” she explains. “But symptoms that seem ‘minor’ to doctors, like persistent dryness or extreme fatigue, can drastically impact a patient’s quality of life.”
“Our healthcare system needs to listen to patients and treat them as partners in their care,” Ms. Oza says. Through Sjögren’s India, she is working to bridge this gap by educating both patients and healthcare providers. The organisation provides resources to help patients articulate their needs during medical consultations and encourages doctors to address the full spectrum of challenges faced by individuals with Sjögren’s.
Aparna Mittal, founder of PatientsEngage, an online platform enabling patient engagement and empowerment, says she believes in the power of collaboration between doctors, patients and the healthcare ecosystem. “Sjogren’s is a lifelong condition that affects more than just the body. The emotional toll, social stigma, and lifestyle changes required can be overwhelming” she notes.
Ms. Mittal highlights the importance of addressing overlooked aspects of the disease. “Dryness isn’t just about eyes and mouth—it affects every part of a patient’s life, even down to the type of clothing they can wear,” she explains. PatientsEngage collaborates with advocacy groups to amplify the voices of individuals living with chronic conditions like Sjögren’s, aiming to improve care standards and ensure timely and affordable access to quality treatments.
An anonymous patient recounts her journey : “The fatigue is like nothing I’ve ever experienced. It’s not just physical—it’s emotional. You feel like nobody understands because you look fine on the outside.”
Sjogren’s disease in India is a silent epidemic, underdiagnosed and poorly understood. Experts including Dr. Mehta and Dr. Winsely, along with advocates like Oza and Mittal, are working to change that narrative. By fostering partnerships between patients and doctors, building supportive communities, and pushing for systemic change, they hope to create a future where no patient feels invisible.
The diagnosis was a turning point for Lakshmi . “Finally knowing what I was dealing with allowed me to take control of my health. It’s not easy, but with the right care and support, it’s manageable,” she says. Her journey—and that of thousands of others—illustrates both the challenges and the resilience of those living with Sjogren’s disease.
(Dr. Monisha Madhumita is a consultant dermatologist at Saveetha Medical College, Chennai and member of the International Alliance for Global Health Dermatology, London, UK. mail.monisha.m@gmail.com )
Published – November 26, 2024 04:31 pm IST
