Duchenne muscular dystrophy (DMD) is usually known as a muscle disease, but many with DMD also face mental health and neurodevelopmental challenges, according to a recent study published in the journal Archives of Disease in Childhood.
The researchers analyzed the clinical notes and psychological assessments of 264 boys and adults with DMD. They found that about four in 10 of those studied had at least one neurodevelopmental or mental condition, such as attention-deficit hyperactivity disorder (ADHD), autism, depression, anxiety, obsessive-compulsive disorder (OCD) or early signs of psychosis (when people lose some contact with reality).
The occurrence of these disorders varied by age. Conditions like ADHD and autism often appeared in infancy. Anxiety, depression and withdrawal tended to show up during adolescence, a time when many with DMD start losing the ability to walk. More serious problems like intense phobias or psychosis were mostly seen in older boys and adults.
Previous research has linked the loss of two forms of the dystrophin protein — Dp140 and Dp71 — to intellectual disability and speech delays. However, when researchers looked more closely at whether missing these specific proteins was directly related to neurodevelopmental and mental disorders, they found no consistent pattern. This suggests these conditions are not caused by a single factor, but instead arise from a combination of influences, including genetics, environment and life experiences.
Read more about DMD signs and symptoms
Doctors recommended psychological therapy for all 103 boys and adults with neurodevelopmental and mental disorders. In 47 of these cases, they also suggested medication. Those who received treatment showed noticeable improvement in their symptoms.
However, about half of the families declined treatment — often believing that emotional struggles were simply a natural part of living with DMD, or expressing concern about potential side effects.
“Our findings highlight not only the need for better identification and treatment of psychiatric comorbidities in DMD, but also the importance of supporting both clinicians and families in recognising these challenges, particularly in a setting where the severity of physical disability often dominates attention, and awareness of emotional and behavioural issues is only recently emerging within the scientific and clinical communities,” the researchers said.
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