Sjogren’s is the second most common autoimmune rheumatic disorder after rheumatoid arthritis (RA). It’s three times more common than lupus. Sjogren’s affects roughly 4 million people in the US, 9 out of 10 of whom are women. Yet research on Sjogren’s lags decades behind research on RA and lupus. Unlike RA and lupus, there are only a few landscape studies of Sjogren’s and none of them are comprehensive. We have an incomplete picture of all the ways Sjogren’s can manifest in people, which makes diagnosis, management, and treatment extremely difficult.
Sjogren’s is a hidden disability. A hidden disability is a physical, mental, or neurological condition that is not visible from the outside. Most people with Sjogren’s look well and may have normal labs even when they are very sick. The 2021 Living With Sjogren’s patient survey conducted by the Sjogren’s Foundation shows that 80% of people with Sjogren’s experience cognitive impairment (brain fog).
Sjogren’s is expensive and has a high burden of disease. Multiple studies show that 30-40% of working age Sjogren’s patients leave their jobs because of disabling symptoms. Medical insurance does not cover a lot of the products and services Sjogren’s patients need. Dental work is medically necessary for Sjogren’s care but is not covered by health insurance, something for which the Sjogren’s Foundation is advocating.
Despite all the evidence to the contrary, misconceptions about Sjogren’s are widespread amongst healthcare professionals. It’s the patients’ words and hard-earned knowledge against the “experts’” misconceived notions of what Sjogren’s is. These misconceptions are perpetuated in the medical literature, medical education, and publicly available medical platforms, e.g., Mayo Clinic and Cleveland Clinic websites.
Fortunately, the Sjogren’s Foundation offers credible, up-to-date information and develops clinical practice guidelines that inform healthcare professionals on the management of Sjogren’s.
Research on Sjogren’s is essential for ensuring that people with Sjogren’s get the care they need, which is why I walk for Sjogren's.
Your donation to this Walk for Sjogren's funds research on and advocacy for Sjogren's.
Thank you,
Bexi