Recently, a popular television show aired an episode displaying a case of medical child abuse, likely inspired by the case of Justina Pelletier and Boston Children’s Hospital, which is back in the news. On the episode of “Chicago Med,’’ a teenage girl diagnosed with “mitochondrial disease’’ presents to an emergency department with breathing difficulties and is deemed over-medicalized after it is noted that she is on many medications and has undergone many procedures. The girl is ultimately diagnosed with a “conversion disorder’’ and taken into state custody.
Although we do not dispute the diagnosis based on that case’s unique circumstances, we lament the association of a real, disabling disease such as mitochondrial disease with conversion disorder and medical child abuse. Mitochondrial diseases are complex conditions with variable symptoms affecting several organs and presenting in different ways with different degrees of severity. They have devastating effects, not only on patients but on entire families, with limited treatment options and no cure.
Mitochondrial diseases are not well known, even among the physician community. When legitimate awareness is replaced by ill-conceived associations in the popular media, it casts a shadow on the impact this disease has on patients and families. Incorrect statements on the TV show, such as references to mitochondrial disease as a “waste-basket’’ diagnosis, only spawn further medical misconceptions and heighten suspicion. In such a climate, parents of sick children fear they might be falsely accused and actually question the safety of pursuing medical care.
Where rare diseases are concerned, truth and heightened awareness are needed more than a sensational television plot.
Dr. Amel Karaa, clinical geneticist
Massachusetts General Hospital, Boston
Julie Gortze, registered nurse and patient advocate
North Attleborough
Dr. Mark Korson, medical director
Genetic Metabolic Center for Education, Salem
Gortze is a liaison with the National Organization for Rare Disorders.
