For over 20 years, Julie lived a high-energy life defined by half-marathons, skiing, and travel. But in 2018, the reflection in the mirror began to change. What started as subtle shifts in her facial features and slight fatigue was initially brushed off as “aging gracefully.” However, those changes soon evolved into a “perfect storm” of diagnoses: Graves’ Disease, Thyroid Eye Disease (TED), Acromegaly, Hypertension, and Diabetes. This overwhelming reckoning forced Julie to learn a new way of living, grounded in intention and protective of her limited energy.
Julie’s path to treatment was far from smooth. As her symptoms worsened—causing eyelid swelling, light sensitivity, and intense pressure on her optic nerve—she faced a grueling seven-month battle with insurance for medication approval. During this wait, her quality of life plummeted; she struggled to drive, perform her job, or feel comfortable in social settings. When she finally began her six-month IV treatment, a medical emergency during an infusion led to a week-long hospitalization and a diagnosis of medically induced diabetes. This experience solidified her belief in the importance of clinical infusion settings and the need for expert healthcare teams.
Today, Julie has moved from a place of embarrassment and privacy to one of bold advocacy. She recognizes that as a woman of color with multiple rare diseases, her voice is a vital part of the “research.” She works with organizations like the Infusion Access Foundation to ensure that medical professionals see the person before the patient, using “patient-first” language. For Julie, connecting with advocacy groups has been a “healing balm,” allowing her to pool resources and provide a roadmap for others who may be navigating their own “perfect storm” in silence.