In this powerful patient story, Susan shares her journey through Graves’ disease and Thyroid Eye Disease (TED), from the first symptoms of painful light sensitivity and double vision to years of treatments, setbacks, relapse, and ultimately life-changing surgeries. After being diagnosed with TED, Susan endured steroid treatments, eyelid surgeries, biologic therapy, orbital decompression surgery, and strabismus surgery while navigating vision loss severe enough to force her to leave her career. Through every flare-up and challenge, she learned that TED may become inactive, but its impact can remain for years. This powerful story highlights the realities of chronic Thyroid Eye Disease, the emotional toll of relapse, the importance of patient advocacy, and the hope found through community, treatment advances, and support from other TED patients.
