Misdiagnosed lymphoma turns out to be treatable rare inflammatory disease

Cynthia McNeil’s health battle started in 2019 when a painful rash covered her limbs, prompting doctors to eventually label her with T-cell lymphoma. She endured six chemotherapy cycles, which alleviated the rash but failed to normalize her blood tests, and faced three scheduled bone-marrow transplants that were delayed by COVID-19 and a leg lesion. Shortly before a third transplant, Dr. Luke Chen, a hematologist in Halifax specializing in rare disorders, examined her recent labs and recognized a severe case of lymphocyte-variant hypereosinophilic syndrome (L-HES) rather than cancer.

The misdiagnosis had already taken a heavy toll: exhausted by chemo, maxed-out sick leave, high medication costs, and reduced fertility at a time she was planning a home purchase and another child. Since the correct diagnosis, McNeil takes a single pill twice daily, with her physical symptoms virtually gone, though she acknowledges lingering effects from the unnecessary chemotherapy. Her story highlights the challenges of diagnosing rare conditions that resemble more common cancers.