April 2017 marks the 19th annual Sjögren’s Awareness Month. Once again, The Sjögren’s Syndrome Foundation (SSF), along with members and volunteers across the country, will unite to continue its mission of educating patients and families about Sjögren’s, an autoimmune disorder affecting more than 4 million Americans, with an estimated 2.5 million patients currently undiagnosed.
“Our goal is to increase public and health care professional awareness of Sjögren’s, further shorten the time for correct diagnosis, which now takes an average of 3 years, and encourage research into new treatments and a cure for one of the most prevalent autoimmune disorders affecting approximately 1 percent of the US population,” Steven Taylor, SSF’s chief executive officer, said in a news release.
Each day during Sjögren’s Awareness Month, the SSF will be using one or more of its social media channels to educate consumers, health care professionals and others by providing facts about the disease, offering resources, and sharing stories of those with Sjögren’s to help others visualize and better understand what it is like to suffer from Sjögren’s.
“Dry eye is a common early symptom of Sjögren’s and eye care professionals are often on the frontline of diagnosis,” Mr. Taylor said. “We encourage eye care professionals to help us spread the word by following us on Twitter, Facebook, and LinkedIn, and sharing, and commenting on selected posts issued from these channels, using our #ThisisSjogrens hashtag.”
- Twitter (@SjogrensOrg)
- Facebook (@SjogrensSyndromeFoundation)
- Linked In (Sjögren’s Syndrome Foundation)
“Sjögren’s is often referred to as an ‘invisible disease,’ because while patients may experience extreme discomfort, their symptoms are not clearly visible to others,” Stephen Cohen, OD, SSF’s Chairman of the Board, said. “With the added support of eye care professionals and industry partners, we believe we can shine a light on Sjögren’s to ensure greater awareness and understanding of this often-debilitating disease and help patients get an early diagnosis and proper treatment that may prevent serious complications and greatly improve their quality of life.”
An integral part of achieving SSF’s goal also involves ensuring a comprehensive understating of Sjögren’s by health care professionals. The SSF works closely with health care providers to ensure quality and consistency of care for the assessment and management of patients with Sjögren’s. In 2016, The Foundation, with the assistance of hundreds of eye care professionals developed and published the first U.S Clinical Guidelines for Ocular Management in Sjögren’s Patients, which helps to standardize patient care by giving eye care professionals a roadmap of how to treat and manage Sjögren's patients. These guidelines may be downloaded at www.sjogrens.org/files/research/OcularCPG.pdf.
For more information on Sjögren’s, visit www.sjogrens.org.