Patients’ Stories Sought for Sjögren’s Awareness Month

Aisha I Abdullah PhD avatar

by Aisha I Abdullah PhD |

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Sjögren’s Awareness Month

In observance of Sjögren’s Awareness Month in April, the Sjögren’s Foundation is inviting individuals with to share their stories to help raise awareness about this complex condition.

This year’s theme, “Coming Together to Conquer Sjögren’s,” will showcase the many Faces of Sjögren’s and illustrate the complexities of the disease. Raising awareness for Sjögren’s and understanding how patients cope with the disease is even more important now that the world marks more than a year of the COVID-19 pandemic.

To expand its online #ThisIsSjögrens campaign, the foundation will profile a different Sjögren’s patient every day throughout April. Stories will highlight the challenges, triumphs, and journeys of patients living with Sjögren’s syndrome, as well as the diversity and strength of the Sjögren’s community.

Those who wish to feature their story in this year’s campaign should send a questionnaire about their condition and a picture to [email protected], with the subject line “April Awareness Month 2021.”

The survey features questions about what patients learned since diagnosis, most difficult symptoms, how they cope with the condition, what patients wished others understood about Sjögren’s, and tips they would like to share with other patients.

Sjögren’s syndrome affects about 4 million Americans and as much as 4% of the global population. The disorder varies widely from patient to patient, resulting in many going undiagnosed or being misdiagnosed. Moreover, the systemic symptoms of Sjögren’s, such as fatigue, joint pain, and internal organ complication, are largely invisible to the outside world. 

Sjögren’s Awareness Month was established in 1998 to raise awareness about the complexity of the disorder, change perceptions about what it means to live with Sjögren’s, and share the stories of real patients.

Founded in 1985 by Elaine Harris, who was diagnosed with Sjögren’s in 1983, the Sjögren’s Foundation works to increase research, education, and awareness for Sjögren’s syndrome and advocates on behalf of Sjögren’s patients. 

“I wanted more people to know about Sjögren’s, to be able to talk to other patients and have more doctors interested in it,” Harris said in a 2018 interview about her motivation in starting the foundation.

“You have to spread the word and keep trying for those who are living with debilitating manifestations and find it difficult to function,” she said when asked about the importance of patients sharing their stories.