A 12-year-old child underwent six rounds of chemotherapy erroneously prescribed by the NHS after being misdiagnosed with a rare autoimmune condition called Juvenile Dermatomyositis (JDM). Faye Condon’s mother, Christina, expressed that the misdiagnosis had a detrimental impact on Faye’s childhood. Despite Christina’s doubts about the initial diagnosis, it took seven years for Faye to be accurately diagnosed with a form of muscular dystrophy that has no available treatment.
Christina, residing in Plymouth, Devon, shared the challenges her family faced due to the misdiagnosis, leading to prolonged hospital visits and dashed hopes of improvement. She emphasized that if the correct diagnosis had been made earlier, they could have enjoyed more quality time with Faye before her condition worsened.
The ordeal began when Christina noticed Faye’s difficulty in physical activities compared to other children her age. Despite her concerns, doctors at Bristol Children’s Hospital diagnosed Faye with JDM in 2019, which was later proven incorrect. Christina expressed frustration over the lack of proper investigation and treatment that could have prevented Faye’s unnecessary suffering.
After persistently requesting further tests, Christina sought a second opinion at Derriford Hospital, where doctors agreed that the initial diagnosis was flawed. Subsequently, Faye was referred to Great Ormond Street Hospital, where she was diagnosed with de novo Emery-Dreifuss muscular dystrophy (EDMD) type 2, a condition without a cure.
Christina lamented the impact of the misdiagnosis on Faye’s health and daily life, noting the rapid deterioration of her daughter’s condition and the limitations it imposed. The family’s life has been drastically altered, with Faye now facing serious health risks and restrictions due to the delayed correct diagnosis.
In response to the family’s concerns, Professor Steve Hams from Bristol NHS Foundation Trust expressed regret and assured that they would investigate the situation thoroughly with compassion and sensitivity to understand and address the issues raised.
