World Sjögren’s Day – Putting a Face on the Disease – Set for July 23
From sharing personal stories and educating others, to raising funds for research, supporters globally are poised to mark World Sjögren’s Day — set aside each July 23 to heighten awareness of the chronic autoimmune disorder.
Sjögren’s syndrome is thought to occur in approximately 0.1% to 4% of the general population, affecting nearly 4 million patients in the U.S. alone. The disorder predominantly affects women older than 40.
“World Sjögren’s Day is meant to put a face on the millions of people who live with this disease or suffer from symptoms and have yet to be diagnosed,” the Sjögren’s Foundation stated on a webpage about the event.
“It gives everyone touched by Sjögren’s a vehicle to reach out and educate those close to them — family, friends, co-workers, neighbors, etc. — about the disease. It is the ideal opportunity for you to have your voice heard and to spread awareness about this life-altering disease,” the webpage states.
World Sjögren’s Day is held annually on the birthday of Henrik Sjögren, the Swedish ophthalmologist who identified the disorder in 1933.
The foundation is asking patients to share their stories with the people in their lives, using the hashtag #ThisIsSjögrens, to help spread awareness of the disease. The condition is little known and often misunderstood, despite its prevalence.
“Often described as an ‘invisible disease,’ Sjögren’s affects patients differently and everyone has a unique and powerful story to share,” the foundation notes on its webpage, where patients may submit a story and photo of themselves.
In particular, the organization is encouraging patients to write about what having Sjögren’s has taught them, and about how they cope with and manage disease symptoms, especially those they find the most difficult. People with Sjögren’s also are asked to share how the disorder has affected their lives, what they wish people knew about the condition, and what their best Sjögren’s tip is.
The foundation also is inviting patients, caregivers, and supporters to make donations to support Sjögren’s research and education. Donations can be made to honor oneself, a loved one, or the millions of people living with the disease.
Elsewhere, Sjögren Europe — a federation of national associations representing patients — is recognizing the day by educating people about a hallmark of Sjögren’s: eye dryness. While the disease can involve multiple other tissues and damage other body parts, it mainly affects the glands that produce tears and saliva, causing dryness in the eyes and mouth.
In collaboration with the British Sjögren’s Syndrome Association, Sjögren Europe presented a webinar about eye dryness earlier this month that featured ophthalmologist Ankur Barua. Information from the webinar is on the nonprofit’s webpage.