Beth Grundfest-Frigeri, a 32-year-old resident of Queens, New York, had a feeling there was something wrong with her as far back as she can remember. As a child, she watched with dismay while other young kids did simple tasks with ease — tying their shoelaces, buttoning shirts.
“I just physically couldn’t do it,” she recalls. “It wasn’t that I didn’t understand how to.” She also often tripped over her own feet; she couldn’t walk in a straight line due to constant vertigo and joint pain.
By the time she was 12 years old, she’d seen half a dozen specialists, including pediatric neurologists and ear-nose-throat doctors about her chronic sinus infections. No one could explain her symptoms. As she grew sicker, she started to withdraw from hanging out with friends. One doctor diagnosed her with Asperger’s syndrome but Beth knew that wasn’t the real root of her problems. “The isolation caused by the physical stuff held back my social development,” she explains.
At 13 years old, her ankles swelled to five times their normal size. She wore Ace bandages to compress them, requiring her to walk around in sandals in the winter. Each specialist referred her to a different one, including rheumatologists, allergists, a podiatrist, and sports medicine doctors. They all agreed that something was wrong but they didn’t know what. Many told her it was “all in her head.” Eventually, she turned to a psychiatrist, who diagnosed her with depression and prescribed Zoloft.
“It didn’t do anything to help,” she says. “It just numbed me out.”
In her early 20s, still without a diagnosis and unable to work, she filed paperwork to go on disability, which required a complete medical work-up examination. It was then, finally, that doctors discovered something they could not ignore.
