april is sjögren’s disease awareness month
sjögren’s is one of the most common causes of dysautonomia.
sjögren’s is a chronic systemic autoimmune disease that is commonly considered 'just' a disease of dry eyes and dry mouth.
and this characterization of sjögren’s being just dry eyes and dry mouth (although those alone can be very disabling!), is wrong.
in the US alone, it is estimated that 4 million people have sjögren’s disease (millions more than lupus!), and 75% of those patients are undiagnosed. and a lot of this is because too many people only think of sjögren’s as dry eyes and dry mouth. a LOT of patients do not complain of dryness, or only have dryness after other major damage.
sjögren’s disease can affect anyone at any age. it can harm the nervous system, eyes, ears, skin, muscles, joints, mouth, teeth, brain, liver, gut, lungs, and way more. it can cause chronic pain, fatigue, brain fog, infections, loss of vision or hearing. sjögren’s is NOT just dryness. it can be profoundly disabling and it can fucking kill you.
and there is no real diagnostic criteria. the guidelines were designed for research purposes only, and a lot of patients test negative based on those guidelines. the blood test for sjögren’s, by itself, is negative in 30%-40% of patients who have sjögren’s.
which is especially fucking bad since sjögren’s patients are 40 times more likely to develop cancer of the lymph nodes, or lymphoma. sjögren’s patients are more likely to have strokes, heart attacks, miscarriages. sjögren’s patients often have or develop another disorder of the immune system, like another autoimmune disease.
sjögren’s is everywhere. it is not curable and it is not taken seriously enough. it can cause major problems, it can be deadly, it can be monitored, and it can be treated.
- dysautonomiainternational.org
- sjogrens.org
- vimeo.com/dysautonomia
- vimeo.com/819203862