The real challenges facing CMT youth +++
Living with CMT is a daily obstacle course. These include:
- Visible and invisible physical challenges: difficulties walking, falls, loss of dexterity, but also generalized and chronic fatigue that is not always understood by those around them.
- The heavy psychological impact: imagine having to cope with a body that betrays you at a time when your peers are exploring the world without constraints. Studies confirm this: patients with CMT, including young people, have higher rates of psychological distress, depression (around 10% compared to 2% in the general population), and anxiety than the rest of the population.
- Social isolation and identity management: Adolescence is the age of conformity. CMT forces us to be different. Wearing orthotics, walking differently, or being unable to participate in certain sports activities can generate feelings of shame and isolation, and damage self-esteem. Managing energy to "perform socially" is exhausting.
Our commitment, which concerns us all: It's to listen and support +++
Faced with these realities, our role is clear, we as parents, family members or relatives or friends, educators and caregivers: We must recognize that mental health is an integral part of the treatment of CMT.
- Recognition and screening: We must be attentive to signs of distress, such as mood changes, social withdrawal, and excessive fatigue. Healthcare professionals should routinely screen these young people for depression and anxiety.
- Accessible psychological support: It is essential to integrate psychotherapy and support groups into the care pathway. These spaces allow young people to express themselves, share coping strategies, and feel understood.
- Education and adaptation: Occupational therapy can help them maintain their independence and adapt, especially to daily tasks. It's also important to educate those around them (family, friends, school) to create a supportive and inclusive environment. Learning energy management skills should be part of their care from a very young age.
- Promoting resilience: we must encourage these young people to develop their resilience, to define themselves beyond their illness, and to find new passions suited to their abilities.
CMT is a life-changing diagnosis, but it shouldn't define a young person's potential or happiness. By recognizing and actively supporting their mental health, we give them the tools not only to live with CMT, but to thrive.
I encourage you all to be allies, to listen without judging , and to act so that every young person with CMT has access to the psychological support they deserve.
Article written by Dr. JalelEdine, Pediatrician - Expert in Rare, Metabolic, and Genetic Diseases. In collaboration with Tooth Me CMT Solidarité ( toothme.fr ). Illustration by Jaleledineart.
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