Sjögren’s Foundation is Sick of Complaints and has the Guidelines to Prove it!

Sjögren’s syndrome is a chronic autoimmune disease that causes the body’s white blood cells (the cells that ordinarily fight infection) to attack the moisture producing glands.

Patients may have symptoms that include dry eyes, dry mouth, achy joints, and fatigue, but in more serious cases, organs such as the heart and liver can be severely affected.

Four million Americans have Sjögren’s, and of that number 90% are women. It is diagnosed as either a primary or a secondary disease because in half the cases, patients have another autoimmune connective tissue disease such as rheumatoid arthritis or lupus.

Recently, the Sjögren’s Syndrome Foundation issued the first-ever clinical guidelines regarding treating dry eyes, and another set of guidelines about pre-emptive treatment for tooth decay, a frequent complication for patients with dry mouth. Approximately 13 other guidelines are nearing publication.

Katherine Hammit, the VP of Medical Affairs for the foundation regards the issuance of these guidelines as “game changing.” She noticed the foundation was getting a lot of phone calls from frustrated patients who complained their doctors had no idea what Sjögren’s is, and conversely, they also got quite a few calls from HCPs complaining their patients were being difficult.

As a result, and with zero funding from the pharma world, the foundation supported research to better address these issues. Hammitt hopes these medical road maps will result in better treatment for the patients, and more patience for the medical community.

Erica Zahn

Erica Zahn

Erica Zahn is passionate about raising awareness of rare diseases and disorders and helping people connect with the resources that may ease their journey. Erica has been a caregiver, and is a patient, herself, so she completely relates to the rare disease community--on a deeply personal level.

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