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In 2007, Laurie Eustis and Adrienne Love started a Charlotte support group for people with Graves' disease, an autoimmune disorder that occurs when the thyroid gland makes more thyroid hormone than the body needs.
Their group has grown to 75 members from as far away as Asheville and Raleigh.
And this week, Charlotte will host the annual Graves' Disease Foundation annual conference, featuring top medical practitioners and researchers from around the country.
Eustis and Love will be there, urging conferees to ask questions and get support, as they have, from fellow Graves' patients. The two women met three years ago because of their rare illness.
Graves' disease affects about 2 percent of the U.S. population, or almost 10 million people, according to the Graves' foundation.
The disease is at least five times more common in women than men and usually occurs in middle age.
Eustis was one of the younger patients diagnosed with Graves' disease. Now 33, she was 27 and had just given birth to her first child in 2004 when she began experiencing terrifying symptoms: racing heartbeat, a 15-pound weight loss, a tremor in her hands and overwhelming fatigue.
"I couldn't hold a pencil," she said. "I had trouble going up stairs. I could barely carry my baby. ... I really felt that I was going to die."
Love, now 55, was in her mid-40s when she noticed similar symptoms. It took months to find out what was wrong. Love's dermatologist recognized the change in her fingernails as a rare symptom of Graves': The tips had lifted off her nail beds.
Eustis got her diagnosis after a nurse practitioner noticed something was unusual about her eyes.
About half of patients with Graves' disease develop inflammation in the muscles around their eyes, and that results in a characteristic bulging look.
Eustis' eyes protrude slightly and are sensitive to light. She doesn't go outside without sunglasses, even on a cloudy day, and she has difficulty with night and peripheral vision. But she says her eye condition is mild, and two courses of steroids helped bring it under control.
Love developed the same eye problem and chose to have corrective surgery on her eyelids so she can close her eyes completely.
Both Love and Eustis were initially treated with radioactive iodine to destroy their thyroid glands, the small butterfly-shaped glands in the front of the neck. The treatment worked for Eustis, but not for Love, who later had her thyroid gland removed.
Eustis and Love now take thyroid hormone replacement, which helps them to live normally.
Thyroid hormones affect many of the body's functions, including metabolism, brain development, breathing and body temperature.
Despite concerns about how the radioactive iodine treatment might affect fertility, Eustis said her doctors told her she could get pregnant once her disease was under control. Her son Daniel was born in December 2007, joining Liam, who is now 5 1/2.
"For women who are child-bearing age, it can be a terrifying diagnosis," Eustis said.
"It can be a little bit of a long haul getting regulated. But they can have uneventful, healthy pregnancies."
At the conference this week, Richard Kleinmann, a Charlotte endocrinologist, will talk on that subject: "I'm pregnant: How will the management of my Graves' disease change?"
