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Anya in February 2018, just before being discharged after her third brain surgery. Photo credit: Colleen Kelly
In March 2020, at the start of the pandemic, Anya Magnuson's own health was in crisis. The 21-year-old Minnesotan had already endured four brain surgeries, 35 lumbar punctures and about 11 weeks of hospitalization. At various times during the preceding 28 months, she was treated for fungal meningitis, an inflammatory disease known as neurosarcoidosis, and finally a rare blood cancer called Erdheim-Chester disease.
None of the treatments her doctors had prescribed worked; in many cases, they made her condition worse. Her vision was failing. She lost feeling in her feet and could no longer walk. Her headaches were so brutal that after one 13-hour episode of vomiting and writhing in pain, she cried out, "Why can't anyone fix me?"
Ronald Go, M.D., a Mayo Clinic hematologist, and Jithma Abeykoon, M.D., a Mayo Clinic hematology-oncology fellow, two of the large, interdisciplinary team doctors at Mayo Clinic treating Anya, began to question her diagnosis of Erdheim-Chester disease. They wondered whether they should biopsy her spinal cord again. A neurologist consulting on the case thought it would be too risky to perform the procedure in her current state.
While they debated the next steps, the world outside was shutting down. Within Mayo, only surgeries deemed to be "emergency" or "lifesaving" were permitted. Her case was a mystery, and it wasn't clear if a biopsy would provide any answers or just cause more pain.
"It was a really dark time," says Colleen Kelly, Anya's mother.
Read the rest of the article on the Discovery's Edge blog.
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