Christine Gustafson, Executive Director and CEO of the TED Community Organization, discusses her personal journey with thyroid eye disease (TED) and why she started the TED Community Organization.
TED is a chronic endocrine, autoimmune disease characterized by immune-mediated orbital inflammation that greatly impacts a person’s vision. The condition often occurs in people with hyperthyroidism or Graves’ disease, but also can occur in association with hypothyroidism, euthyroidism, and Hashimoto’s thyroiditis. Graves’ disease affects approximately 1% to 2% of the adult population, with an estimated 40% of patients subsequently developing TED over the course of their lifetime. The onset of TED typically occurs between 30 and 50 years of age, with the disease course more severe after age 50. Common symptoms can include ocular discomfort, upper eyelid retraction, dry eyes, tearing, inflammation, erythema, light sensitivity, and sensation of a foreign body present in the eye.
In 2009, Ms. Gustafson experienced the symptom onset of Graves’ disease and TED simultaneously. As an active, health-conscious person who swam a mile every day, she was surprised to find herself suddenly dealing with racing heart, anxiety, shakiness, and eye symptoms. After an appointment with an endocrinologist, she received her diagnosis of Graves’ disease.
At the time, TED was believed to be a symptom of Graves’, so she was told to wait for the disease to progress– about two to three years– and then she could have surgery to return her eyes to their natural position. This was the only treatment option she was given for her TED. In recent years, however, research on TED has greatly expanded and patients now have a variety of treatment options available to them.
Many patients with TED also struggle with the facial disfigurement the disease causes. Citing a particular instance in which a young child asked if she was a witch, “My heart, of course, broke into a million pieces,” Ms. Gustafson recalls. Situations like this often cause patients with TED to isolate themselves, making recovery a lonely journey.
This feeling of loneliness and fear was what prompted Ms. Gustafson to create the TED Community Organization, a non-profit advocacy group focused on educating, supporting, and connecting patients with TED. Some of the group’s offerings include conferences, support groups, educational resources, and the ability to create art which is then used in advocacy work.
Now on the other side of the disease, in what patients refer to as “NED” or “no evidence of disease,” Ms. Gustafson spends her time helping others take their lives back. Upcoming initiatives include a quality of life program (focusing on teaching patients how to better their lifestyles, and in turn their disease recovery) and a storytelling workshop that will help patients tell their stories to not only doctors, family members, media, etc., but to themselves.
“What story are we telling ourselves? It’s really important because the story that person tells themselves, determines the path they’re going to take for their own recovery. And so we are really good about rewriting that story, helping people rewrite their story.”
To learn more about TED, visit our Thyroid Eye Disease Learning Center.
