World Mental Health Day 2025: Supporting the Boys and Girls Who Need Us Most
- Alex Smith
- Oct 9
- 3 min read
Updated: Oct 10
Today, on World Mental Health Day 2025, we turn our focus to a community whose emotional and psychological needs are often overlooked: children living with Duchenne Muscular Dystrophy (DMD) and their families. While advancements in medical care have improved physical outcomes, the mental health impact of Duchenne is profound and frequently invisible.
The Hidden Struggles of Duchenne
Duchenne is a rare, progressive muscle-wasting condition that predominantly affects boys, with girls being far less frequently diagnosed. While the physical effects of Duchenne are well recognised, the emotional and psychological toll on children and their families is significant. Research from expert clinical psychologists shows that children with Duchenne are more than twice as likely to experience anxiety, depression, and emotional distress compared with their peers without the condition.
A study by Gocheva et al. (2019) found that 15%–47% of children with Duchenne were psychosocially “at risk” for emotional and behavioural problems. Nearly half of caregivers reported very high levels of parenting stress. The study highlighted that reducing parental stress and participating in support groups were associated with better psychosocial adjustment in children with Duchenne.
The Emotional Burden on Families
The challenges of Duchenne extend beyond the affected children to their families. Parents and caregivers often experience elevated levels of psychological stress, stemming from the demands of caregiving, uncertainty about the future, and the emotional strain of witnessing their child’s condition progress. Coordinating complex care routines, managing medical appointments, and supporting educational and social development add to this pressure.
Studies, including guidance from Parent Project Muscular Dystrophy (PPMD), emphasise that recognising signs of anxiety and depression early—and providing support for both child and family—is critical to improving overall quality of life.
The Need for Specialist Mental Health Support
Despite clear evidence of need, access to specialist mental health services for children with Duchenne remains limited. Research indicates that only a minority of patients benefit from regular psychosocial care. This gap underlines the importance of initiatives that integrate clinical psychology and ongoing tailored support into the care of children with Duchenne, ensuring families receive expert guidance at every stage of the journey.
Harrison’s Fund and Project Chrysalis
At Harrison’s Fund, we are committed to addressing this gap. Through Project Chrysalis, we provide access to specialist clinical psychology and ongoing tailored support, helping children and their families navigate the complex emotional landscape of living with Duchenne. Over the past year, we have supported families across the UK in collaboration with six NHS Trust Neuromuscular Departments, offering continuity of care and expert guidance.
These interventions have demonstrable impact: children and families experience improved psychosocial adjustment, reduced anxiety and distress, and strengthened coping strategies. The evidence is clear—supporting mental health alongside physical care is essential to the well-being of children with Duchenne.
A Call to Action
This World Mental Health Day, we urge the community to recognise the importance of mental health in the lives of children with Duchenne and their families. By raising awareness, advocating for increased access to specialist mental health services, and supporting initiatives like Project Chrysalis, we can make a tangible difference.
Together, we can ensure that no child or family faces Duchenne alone. Mental health is not a luxury—it is a fundamental component of overall health and well-being. Let us commit to supporting the mental health of children with Duchenne, today and every day.
References:
Gocheva, V., Schmidt, S., Orsini, A.-L., Hafner, P., Schaedelin, S., Weber, P. & Fischer, D., 2019. Psychosocial adjustment and parental stress in Duchenne muscular dystrophy. European Journal of Paediatric Neurology, 23(6), pp.832–841.
Parent Project Muscular Dystrophy, 2025. Depression & Anxiety. [online] Available at: https://www.parentprojectmd.org/care/care-guidelines/by-area/learning-and-behavior/depression-and-anxiety/[Accessed 9 October 2025].
Neuromuscular Disorders, 2025. MDA Study Highlights Lack of Psychosocial Care Services in Duchenne Muscular Dystrophy. [online] Available at: https://www.neurologylive.com/view/mda-study-highlights-lack-psychosocial-care-services-duchenne-muscular-dystrophy [Accessed 9 October 2025].
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