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Christine Gustafson had always been the picture of health. She swam a mile each day and biked regularly. Then, seemingly overnight, she began experiencing a series of health-related symptoms that would ultimately change her life.
“It started with a racing heartbeat. I was anxious all the time. I started losing weight without explanation. My eyes were also getting very red, painful and irritated,” said Gustafson. “It was hard to comprehend what was going on with my body.”
So began the long, arduous journey of trying to determine the cause of Gustafson’s mysterious symptoms. After months of doctor’s appointments, she was finally diagnosed with two separate, but related, autoimmune diseases — Graves’ disease and thyroid eye disease (TED).
A life turned upside down by Graves’ disease
Autoimmune diseases occur when the body’s immune system mistakenly attacks its own tissues, organs or cells. Certain autoimmune disorders can be caused by harmful immunoglobulin G (IgG) autoantibodies, and are typically chronic, unpredictable and debilitating conditions.
In Graves’ disease, the harmful IgG autoantibodies attack the thyroid and cause it to make more hormones than the body needs. The resulting condition is known as hyperthyroidism.
Gustafson’s doctors said that her thyroid hormone levels were the highest they’d ever seen. Because of that, she experienced many of the common symptoms of hyperthyroidism including rapid heartbeat, unexplained weight loss, shortness of breath, anxiety, fatigue and muscle weakness.
“I remember the anxiety the most — it was paralyzing. I couldn’t sleep and struggled to go out,” said Gustafson. “I remember thinking — how could this be my life?”
An emotional struggle with TED
About half of people diagnosed with Graves’ disease will also go on to develop TED. In addition to attacking the thyroid, the same harmful autoantibodies bind to thyroid hormone receptors in tissues around the eyes, causing inflammation, pain, double vision, and swollen, bulging eyes.
Over time, Gustafson found that her eyes kept changing and getting worse. Her vision was blurred, and the sunlight was blinding. At one point, she felt that she looked like her eyes were dangling by a thread. But the most challenging aspect was the emotional toll that an ever-changing appearance had on her life.
“I avoided mirrors and cameras and struggled mightily to maintain my self-esteem,” said Gustafson. “I felt isolated, and incredibly alone. I put tremendous effort into not losing myself to Graves' and TED.”
Forging a path forward
While Graves’ disease and TED are related disorders, they require distinct management approaches. For many people, including Gustafson, it can be a challenging path to navigate.
“I thought the Graves’ medication would help with my eyes, but it didn’t,” said Gustafson. “It took almost four years for me to finally be referred to an eye specialist. Since then, I’ve had seven eye surgeries and, while I’ve seen benefits, there have also been complications.”
Today, Gustafson recommends that people do their research and have informed conversations with their doctors. Clinical research is also actively advancing to identify more and better treatment options for people living with autoimmune diseases like Graves’ disease and TED. (To learn more about clinical studies designed to address the complex and variable needs of people living with autoimmune diseases like TED, visit Immunovant.com.)
Gustafson also recommends connecting with others who have been on a similar journey, something that she helps foster through the work of her nonprofit, the TED Community Organization.
“My hope is for more education around Graves’ and TED, increased awareness in the healthcare community and innovation to address the needs of people living with these autoimmune conditions,” said Gustafson.
Editor’s note: The rising prevalence of autoimmune disease is a concerning trend that underscores the urgent need for increased awareness, education and research. Data indicates that autoimmune diseases affect approximately 50 million Americans. Even more alarming, autoimmunity is reaching epidemic levels, with some studies estimating an increase of 3-12% annually (Source: Autoimmune Association).
