Sam is an upbeat, multi-tasker. She is a single mother, an avid paper crafter, teacher, and a researcher at the University of Michigan at Dearborn. But two years ago, she began to experience pain in the back of her neck. She was given a prescription for ibuprofen, but the pain did not go away.

Another doctor gave her a shot that was supposed to relieve the pain for two weeks, but the relief lasted only two hours. “I had never been really ill in my life. I thought I was a hypochondriac because then I started having temporomandibular joint disorder,” says Sam. “It was also difficult to pull a t-shirt over my head.” Eventually, Sam had to cancel teaching and back away from paper crafting.

Her regular doctor was on vacation, so she saw a second internist who diagnosed her with polymyalgia. She went home and immediately began researching the condition. She realized that she might actually have giant cell arteritis (GCA). A temporal biopsy confirmed her hunch. As an African-American, she does not fit the typical profile, and she is grateful for the almost-correct diagnosis and for her own research and advocating.

GCA is an inflammation of blood vessels, most often in the scalp and head, particularly around the temples. A persistent headache is a common symptom. (GCA can overlap with polymyalgia rheumatica.) GCA occurs only in older adults. Women, particularly women of Scandinavian descent, are 2-3 times more likely to have it than men. If not treated promptly, it can lead to loss of vision, stroke or death.

Because there is not much awareness about GCA and because Sam is so positive, many of her friends were unaware about her level of pain. “The only person who really understood is a friend who is a retired pediatrician,” she says. “Now I have an elevator speech about GCA and two friends who go with me to my doctor’s office.”

She is now in treatment, but the side effects have been debilitating. She developed an ulcer in her mouth and an issue with her internal sugar regulation that became pre-diabetes. Nonetheless, she knows she is one of the lucky ones. She could have lost her sight permanently. “I remember to appreciate the birds singing in the morning and the smaller things in life,” says Sam. “Now I also have a greater appreciation for pain my brother experienced most of his life. He died at the age of 50 and had rheumatoid arthritis since he was seven years old.”

And as her pain and symptoms subside, she is returning to her passions, preparing to teach once again and making greeting cards and purses for friends.