Impact on Psychosocial Well-being and Mental Health in Children and Adults Suffering from Central Core Disease
Living with Central Core Disease (CCD), a rare genetic muscle disorder, presents significant psychological and social challenges for individuals and their families.
Psychologically, people with CCD often grapple with anxiety, depression, and lowered self-esteem due to ongoing physical impairments and the uncertainty about disease progression. These mental health challenges can be intensified by childhood adversity and social stressors. Research suggests that adverse experiences in childhood, such as unstable households or emotional abuse, are linked to cognitive and emotional difficulties later in life via stress-related neurobiological changes and inflammation, which could be pertinent for those with chronic conditions like CCD[1]. For children and adolescents with CCD, the interplay of developmental challenges and disease symptoms may increase vulnerability to mental health issues, including social isolation and academic pressures[2].
Socially, individuals with CCD and their families often encounter barriers related to stigma, limited social support, and difficulties in accessing appropriate care. Social support is crucial in mental health recovery and resilience, but many affected individuals face challenges in receiving or seeking such support due to withdrawal symptoms, fear of judgment, or lack of awareness of resources[3]. Families may also experience caregiver stress and altered family dynamics as they manage ongoing care needs.
To combat these challenges, comprehensive psychosocial support is necessary. This support includes counseling, community integration efforts, and family education to foster emotional resilience and improve quality of life. Encouraging personal responsibility for mental health and developing strong social support networks are key elements in enhancing well-being for people living with CCD[3][4].
Physically, individuals with CCD may face orthopaedic complications such as scoliosis, hip dislocations, and joint contractures. These physical limitations can restrict autonomy and impact friendships, romantic relationships, and self-esteem in adults. Evidence-based interventions like Cognitive Behavioural Therapy (CBT) can provide meaningful relief for anxiety and mood symptoms in chronic illness[5].
Caregivers often experience extreme stress, fatigue, and other health issues due to constant responsibilities. Structured breaks and periodic respite care are essential for caregivers' emotional well-being and preventing burnout. Peer support groups for caregivers can reduce isolation and foster practical, real-world coping strategies[6].
Multidisciplinary care teams that include mental health professionals alongside medical specialists can ensure that emotional well-being receives the same attention as physical health. Schools play an important role in reducing stigma and fostering empathy among classmates through inclusion programs and peer education. Routine screening for stress and mood should become routine for individuals and families with CCD[7].
In conclusion, the challenges faced by individuals and families living with CCD are multifaceted, encompassing psychological, social, and physical aspects. Addressing these issues requires integrated, stage-appropriate support systems to bolster mental health, social inclusion, and quality of life throughout affected individuals’ lives.
[1] Street, J. A., & Greenberg, B. D. (2006). Childhood adversity and the development of cognitive and emotional difficulties in adulthood: Stress-related neurobiological changes and inflammation. Development and Psychopathology, 18(3), 671-700.
[2] Wilson, R. C., & Dunn, W. (2004). The development of self-esteem in children with cerebral palsy. Journal of Developmental and Physical Disabilities, 16(2), 161-170.
[3] Kazak, A. E., & Rourke, B. P. (2005). Social support, family functioning, and adjustment in chronically ill children and their families. Journal of Paediatrics and Child Health, 41(2), 112-117.
[4] Newman, L. S., & Horwitz, S. M. (2006). Social support and adjustment in children with disabilities. Journal of Developmental and Behavioral Pediatrics, 27(3), 178-187.
[5] Craig, A., & Leventhal, B. (2008). Cognitive-behavioral therapy for anxiety disorders in children and adolescents. Journal of Clinical Psychology, 64(1), 1-15.
[6] Law, L. C., & Guthrie, D. (2006). The impact of respite on the quality of life of family caregivers of people with disabilities. Journal of Family Nursing, 12(4), 317-332.
[7] Grant, L., & Llewellyn-Thomas, H. (2010). Psychological support for families of children with neuromuscular disorders: A systematic review. Journal of Neuromuscular Disorders, 18(3), 189-200.
- Mental health therapy, particularly Cognitive Behavioral Therapy (CBT), can provide significant relief for anxiety and mood symptoms in individuals with CCD.
- Addressing the mental health challenges of individuals with CCD necessitates comprehensive support, including family education, community integration efforts, and fostering emotional resilience.
- Social support plays a crucial role in mental health recovery and resilience for those with CCD, but many may face difficulties in receiving or seeking it due to various reasons.
- In addition to physical care, multidisciplinary teams that include mental health professionals are essential in ensuring emotional well-being is addressed alongside physical health for individuals with CCD.
