Sjögren’s Awareness Month will shine spotlight on patients’ stories

#ThisIsSjögrens campaign will feature a person with the disease through April

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by Mary Chapman |

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To help shed light on what it’s like to live with Sjögren’s syndrome, a systemic autoimmune condition thought to affect about 4 million U.S. residents, this year’s Sjogren’s Awareness Month will focus on stories from the patients themselves.

The annual April event is designed to showcase the disorder and the needs of the Sjögren’s community by raising awareness among policymakers, public authorities, industry representatives, researchers, health professionals, and the general public.

“Every patient has a unique and powerful story to share and it is the collection of your experiences that portrays this complex disease,” the Sjögren’s Foundation states on its awareness month webpage. “We not only want to raise awareness of Sjögren’s, but also come together to connect ‘patient to patient’ and share how patients are effectively coping with the disease and offer advice for others.”

The organization is encouraging patients to submit their stories and a photo online as part of its #ThisIsSjögrens campaign. Throughout April, a different person will be showcased on its website and social media platforms, the idea being that, while individual posts may offer a glimpse into life with Sjögren’s, all the narratives can provide a more complete view of their experience.

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This year’s campaign will let people with Sjögren’s offer and receive advice from each other on various topics such as symptoms, disability insurance, dating, or what being employed is like, or being a student with the condition.

Supporters may also register in this year’s National Patient Conference, a two-day virtual event on April 5-6 that will focus on information about the most common symptoms, along with things patients should be aware of to remain healthy, and a summary of research being conducted in Sjögren’s. Registration costs $80 for members and $100 for nonmembers, who will be able to purchase membership at registration for $116.

Registration is also open for Walk for Sjögren’s, the organization’s national awareness and fundraising initiative, which kicks off April 13 at 10 a.m. EST with the virtual Mid-Atlantic & National Walk for Sjögren’s for residents of Washington, D.C., Maryland, Virginia, West Virginia, and nationwide. The event, which seeks to raise $25,000 to support education and research, will include a question-and-answer session with experts.

On May 11, the Philadelphia Tri-State Walk for Sjögren’s, which targets residents of Philadelphia, New Jersey, and Delaware, will take place 9 a.m. EST at the Philadelphia Zoo and will feature a health fair, a discussion with experts, and arts and crafts and face painting. The fundraising goal is $50,000.

The foundation’s first Midwest Walk for Sjögren’s for residents of Iowa, Illinois, Indiana, Michigan, Minnesota, and Wisconsin will be held June 1 at 8:30 a.m. CST at Elver Park in Madison, Wisconsin. The event, with a fundraising goal of $30,000, will feature a health fair and family-friendly  activities.

Lastly, the virtual Colorado Walk for Sjögren’s takes place June 22 at 10 a.m. MST and seeks to raise $20,000. The foundation’s Walk for Sjogren’s theme this year is “Conquering Sjögren’s, One Step at a Time!”

To help raise awareness during April, the foundation is also offering a 40th anniversary edition Awareness Kit for $34 for members and $39 for nonmembers. The kit includes a tote bag, foundation pen, car magnet, T-shirt, flyer, and anniversary bookmark, and comes with a summary of the “Living with Sjögren’s” patient survey,”, an anniversary timeline with major Sjögren’s milestones, and brochures that explains the disorder and the symptoms of dry eye and dry mouth.