April is Sjogren's Awareness Month: Educating communities and supporting patients

April marks Sjögren’s Awareness Month, a national observance dedicated to increasing public understanding of Sjögren’s syndrome, a systemic autoimmune disease that affects millions yet remains underdiagnosed and often misunderstood. This month serves as an opportunity to highlight the challenges faced by individuals living with Sjögren’s, share educational resources, and promote the efforts of advocacy groups and research foundations working toward better treatment and awareness.

Sjögren’s syndrome is a chronic autoimmune condition in which the body’s immune system mistakenly attacks its own moisture-producing glands. While it is widely known for causing dry eyes and dry mouth, the disease can also involve multiple systems of the body, leading to symptoms such as joint pain, extreme fatigue, and complications in the lungs, kidneys, gastrointestinal system, and nervous system. In some cases, it can result in serious complications, including an increased risk of lymphoma.

The condition affects an estimated four million Americans, with women making up approximately 90 percent of those diagnosed. Though it can appear at any age, it is most commonly diagnosed in individuals between 40 and 60 years old. Sjögren’s can occur as a primary condition or in conjunction with other autoimmune diseases such as lupus, rheumatoid arthritis, or scleroderma, making diagnosis more difficult.

One of the ongoing challenges with Sjögren’s is the delay in diagnosis. On average, it takes about three years from the onset of symptoms for a patient to receive an official diagnosis. Many individuals go through years of unexplained symptoms and misdiagnoses, which can lead to frustration, untreated disease progression, and emotional distress. Early detection is crucial for managing symptoms and preventing long-term damage, but limited public awareness and the condition’s varied presentation often result in missed or delayed diagnoses.

Several key organizations are at the forefront of the movement to improve the lives of those affected by Sjögren’s. The Sjögren’s Foundation, the leading nonprofit organization in the United States dedicated exclusively to this condition, plays a central role in raising awareness, supporting research, educating healthcare providers, and offering resources for patients. The Foundation leads national campaigns during April, including social media initiatives, virtual events, and community outreach to promote understanding of the disease and reduce diagnostic delays.

Other groups such as the American Autoimmune Related Diseases Association (AARDA), the Autoimmune Association, and the National Organization for Rare Disorders (NORD) also contribute to the autoimmune awareness effort, including Sjögren’s syndrome in their educational programming and public health advocacy. These organizations work collaboratively to fund research, influence healthcare policy, and provide support to individuals living with autoimmune conditions.

During Sjögren’s Awareness Month, various activities take place to engage the public and medical community. These include informational webinars, patient storytelling campaigns, awareness walks, educational articles, and calls to action aimed at encouraging legislative support for autoimmune disease research and patient care initiatives. This year’s national theme, “It’s More Than Just Dryness,” emphasizes the complexity of the disease and aims to shift public perception away from its more visible symptoms to the broader systemic impact it can have on a person’s life.

Participation in awareness efforts throughout April is one way individuals and communities can make a difference. Sharing accurate information, supporting fundraising efforts, attending awareness events, and advocating for increased research funding are all meaningful contributions. Connecting with trusted sources like the Sjögren’s Foundation and related organizations provides an opportunity to learn, get involved, and support those affected.

As April continues, Sjögren’s Awareness Month serves as a powerful reminder that behind the statistics are real people facing daily health challenges. Through increased awareness, education, and collaboration, strides can be made in improving early diagnosis, advancing research, and ensuring that no one living with Sjögren’s feels unseen or unheard.