Patients, advocates working this month to raise awareness of Sjögren’s
Disease often diagnosed late due to common symptoms, lack of awareness
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Sjögren’s Awareness Month is marked each year in April, and for this year, advocates and organizations are encouraging people affected by Sjögren’s disease to continue spreading awareness by sharing their personal stories and participating in events across the U.S.
Leading the charge is the Sjögren’s Foundation, a Virginia-based nonprofit.
“Today, every April, we continue [our] mission — working to raise awareness, amplify patient voices, and shine a light on the realities of living with Sjögren’s,” the foundation states on its awareness month webpage.
While Sjögren’s is one of the most common autoimmune diseases in the world, affecting millions of people globally, it remain underrecognized. Many people still do not know about it or how it manifests.
Because of litle awareness, symptoms that can vary from person to person, and manifestations such as fatigue that mimic those of other diseases, patients are often diagnosed late and may have limited treatment options, according to the nonprofit.
Sjögren’s Awareness Month began in 1998, when Congresswoman Louise Slaughter entered Sjögren’s into the Congressional Record, bringing it to national attention. Every April, efforts continue to raise awareness and voice the realities of living with the disease.
#ThisIsSjögrens campaign aims to highlight patient stories
The Sjögren’s Foundation’s #ThisIsSjögrens campaign is meant to highlight the many faces of this complex and highly underestimated disease.
“Throughout April, we will feature a different patient story each day — offering a glimpse into life with this complex disease,” the foundation states. “Together, these stories will paint a fuller picture of what Sjögren’s truly looks like.”
Patients can write their story or record a video for a chance to be featured in the campaign. Submissions can speak to questions about diagnosis, daily life, tips for living with Sjögren’s, and what people should know about the disease. Responses can be reviewed before submitting, and completing the story takes about five to 10 minutes.
When you have Sjögren’s, you might look perfectly fine on the outside, but you’re not. … You’re constantly fighting.
The first of these stories features Maria’s journey. She was diagnosed at 21, much younger than the age at which people are typically found to have Sjögren’s. (Most patients are older than 40.) In addition to dry eyes and mouth, as well as joint pain and fatigue, Maria also experiences high levels of anxiety.
“When you have Sjögren’s, you might look perfectly fine on the outside, but you’re not,” Maria said in one of her videos, noting that the diagnosis was “incredibly scary.”
“People don’t understand that you’re constantly worried, you’re constantly fighting,” Maria said. “Every time there is a new pain, or a new symptom, or a new feeling inside of your body, you wonder ‘Is it because of Sjögren’s?’”
The Sjögren’s Foundation also encourages following its social media accounts and using #ThisIsSjögrens when sharing content, either patient stories or campaign posts. “Help amplify their voices by sharing these stories and spreading awareness within your own community,” the foundation said in a Facebook post.
Because patients are their own best advocates, making information easy to find is essential, according to the foundation, which makes brochures and information sheets available to use.
Virtual National Patient Conference slated for April 10-11
Among a number of events sponsored by the Sjögren’s Foundation in the coming months is the National Patient Conference, a virtual, two-day educational event that offers the latest information on Sjögren’s.
Sessions are scheduled for April 10-11 and cover an and cover an overview of Sjögren’s, organ-specific symptoms, results of patient surveys, new guidelines, and discussions with doctors and researchers. Tickets can be purchased ahead of time and cost between $80 (for members) and $116.
Supporters are also encouraged to participate in the foundation’s Walk for Sjögren’s, which brings the community together to raise funds for research, increase awareness, and educate patients and providers.
These events, which offer in-person and flexible virtual options, allowing everyone to participate, include the Philadelphia Tri-State Walk on May 2, a spring virtual walk on May 16, and a fall virtual walk on Oct. 10.
