Awareness Month spotlights what life is like for people with Sjögren’s

Annual event hopes to bring attention to autoimmune disease affecting 4M in US

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by Mary Chapman |

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To help people understand what life is like with Sjögren’s syndrome, a disorder that affects an estimated four million people in the U.S., this year’s Sjögren’s Awareness Month will again spotlight personal stories from patients.

The event, observed each April, seeks to bring attention to the systemic autoimmune disease and the needs of the Sjögren’s community. It hopes to boost awareness among the general public, as well as lawmakers, industry representatives, public authorities, scientists, and health professionals.

“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 stated on a webpage about the event. “We not only want to raise awareness of Sjogren’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.”

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#ThisIsSjögrens campaign seeking personal submissions from patients

Each day this month, the foundation will feature a different patient on its website and social media platforms. Individually, the daily posts offer a peek into patients’ lives. Cumulatively, they may provide a more complete picture of the Sjögren’s journey.

“While the daily posts will each give one small glimpse into living with Sjögren’s, by the end of April, we hope these 30 posts will help others understand that the disease is serious, systemic and prevalent,” the foundation stated on another webpage.

Patients are invited to submit their stories online for the #ThisIsSjögrens campaign. “We hope these stories will help create a better understanding of this complex disease and let all patients know that there is support through this community,” the submission page states.

Often referred to as an “invisible” disease, Sjögren’s affects the whole body. Its symptoms can include pervasive dryness, including in the mouth and eyes, as well as fatigue and chronic pain. Because patient experience varies from person to person, the disease is sometimes misunderstood. As a result, those living with Sjögren’s can feel isolated.

“You are the voice and the face of the Foundation and it is the collection of your experiences that truly portrays this complex disease,” the organization states on an awareness month webpage.

Awareness month supporters may also register during April for Walk for Sjögren’s, the foundation’s national awareness and fundraising initiative. This year’s Philadelphia Tri-State Walk for Sjögren’s — aimed at Philadelphia, New Jersey, and Delaware residents — will take place on May 13 at 9 a.m. at the Philadelphia Zoo and will feature a health fair, an ask-the-expert program, and family-friendly activities, such as a photo booth, face painting, and arts and crafts. Virtual walks will also take place on June 10 at 10 a.m. in Texas and at 10:30 MT in Colorado.