Gary Joseph Lelli, MD, of the Department of Ophthalmology at Weill Cornell Medicine, describes the thyroid eye disease (TED) patient population.

TED is a rare autoimmune disease causing permanent facial disfigurement which can severely affect patients’ quality of life and daily function. TED is most often associated with Graves’ disease (GD), but also can occur in association with hypothyroidism, euthyroidism, and Hashimoto’s thyroiditis. GD affects approximately 1% to 2% of the adult population, with an estimated 20-50% of GD patients subsequently developing TED over the course of their lifetime.

As Dr. Lelli states, women are 4-5 times more likely to have TED than men though men tend to have more severe forms of the disease. It has a bimodal age distribution wherein individuals in their early- to mid-40s and those in their early- to mid-60s are most likely to have the disease. The patient population for TED is particularly heterogeneous  in terms of how rapidly onset occurs in patients. For some patients, they may go from feeling fine to experiencing severe symptoms (e.g., eyelid retraction, proptosis, double-vision) within a few weeks. For others, the symptoms of TED progress slowly and it is only due to their history of GD and slight changes in their physical appearance that these patients seek medical attention for their TED symptoms. 

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