Washington Post Her dogged efforts lead to a new scientific discovery that may help others with long covid and other chronically fatiguing illnesses
Amanda Twinam’s journey to understand her decades-long fatigue began with a breast cancer diagnosis at age 28. Twinam underwent a mastectomy before enduring chemotherapy. The medicines made her sick and triggered seizures, which eventually brought her to a rheumatologist.
That doctor found a marker for autoimmune diseases in Twinam’s blood. And yet, none of the proposed diagnoses fully fit. “Fatigue was my primary complaint, sometimes my only complaint,” says Twinam, who’d had a bout of suspected mononucleosis in high school that left her exhausted for months. “But no one knew what to do.”
In 2015, after further testing, Twinam, now 44, was found to carry a genetic cancer disorder, Li-Fraumeni syndrome. A second breast cancer diagnosis shortly followed, and Twinam underwent another mastectomy. But Twinam knew that something else was wrong.
As she moved into her 40s, she was having increasing trouble standing and walking. The Albany, N.Y., lawyer scaled back to part-time work, as she couldn’t keep up with her legal cases while raising a young daughter.
“I was a decreasingly functional human and had no great explanation for it, which made me feel crazy,” she says. Doctors didn’t “know what to do with me.” So Twinam undertook a years-long journey to understand her continuing fatigue, neuropathy, muscle weakness and other problems.
Her dogged efforts led to a new scientific discovery at the National Institutes of Health and a promising new line of research that may end up helping many other people with chronically fatiguing illnesses, possibly including long covid.