Faye Condon, a 12-year-old girl from Plymouth, endured six rounds of chemotherapy and years of unnecessary treatment after doctors misdiagnosed her condition. She was initially diagnosed with Juvenile Dermatomyositis (JDM), an autoimmune disease, at age five. However, her mother, Christina Condon, suspected the diagnosis was wrong and pushed for further testing.
Seven years of misdiagnosis
For seven years, Faye underwent chemotherapy, home injections, and a muscle biopsy. Despite all tests for JDM being negative, doctors at Bristol Children's Hospital (BCH) maintained the diagnosis. In November 2019, Faye was officially diagnosed with JDM, leading to her first chemotherapy round in January 2021. Christina described the treatment as 'horrific,' noting that Faye contracted viral meningitis as a side effect.
In 2023, a British Medical Journal study estimated that misdiagnoses affect about one in 18 patients in primary and secondary care. Christina eventually sought a second opinion at Derriford Hospital in Plymouth, where doctors agreed the JDM diagnosis was incorrect and referred Faye to Great Ormond Street Hospital (GOSH).
Correct diagnosis at GOSH
At GOSH, a specialist diagnosed Faye with de novo Emery-Dreifuss muscular dystrophy (EDMD) type 2, a rare genetic condition with no treatment. The diagnosis was confirmed with a simple genetic blood test. Christina said, 'All it took to diagnose her was a blood test with specific genetic testing, but the doctors at BCH were so adamant that it was JDM they never sent for this test.'
Faye is now losing the use of her legs and requires a ventilator at night. Christina is making a formal complaint against BCH. Professor Steve Hams, chief nursing and improvement officer at Bristol NHS Foundation Trust, said, 'We are very sorry to hear of the concerns raised by Faye's family and our thoughts are with them. We are reaching out to her mother to listen to and understand her family's experience.'
