Building Resilience: Mental Health and NF

The most recent NF Knowledge Series webinar, presented by Dr. Ethan Lester, a clinical psychologist at Mass General Brigham and assistant professor of psychiatry at Harvard Medical School, focuses on mental health and resilience in individuals living with NF. Dr. Lester has extensive experience in neurology, ophthalmology, rehabilitation, and psychiatry, and has been actively involved with the Children's Tumor Foundation (CTF) since 2018. His compassionate, whole-person approach provides valuable insights into the mental health challenges faced by people with NF and the strategies to enhance resilience.

Understanding the Mental Health Impact of NF

NF refers to a group of genetic disorders that cause tumors to grow on nerves, including neurofibromatosis type 1 (NF1) and all types of schwannomatosis (SWN), such as NF2-related schwannomatosis (NF2-SWN). People with NF often experience higher rates of mental health challenges compared to the general population. Approximately 46% of adults with NF have at least one psychiatric co-occurring diagnosis, primarily mood or anxiety-related disorders. The presence of visible neurofibromas is associated with reduced quality of life, lower self-esteem, and higher internalizing symptoms like anxiety and mood disorders.

Individuals with NF frequently encounter internalized stigma and discrimination across various settings, including work, school, and personal relationships. This stigma can lead to social isolation and prevent individuals from seeking necessary mental health care. Additionally, families of children with NF experience higher levels of stress and conflict, further impacting the mental health of both the individual and their family.

Building Resilience: Coping Strategies and Social Support

Resilience is the process of adapting well in the face of adversity, trauma, or significant stress. For people with NF, resilience involves effective coping strategies, social support, and acceptance. Higher resilience scores correlate with lower mental health issues and better quality of life. Strategies to enhance resilience include:

• Psychological Coping: Engaging in cognitive behavioral therapy (CBT) techniques such as positive reframing and cognitive restructuring can help individuals make sense of their experiences and improve mental health outcomes.
• Social Support: Strong family ties, peer networks, and community connections, such as those provided by CTF, are crucial in reducing social isolation and stigma.
• Mindfulness and Self-Compassion: Practicing mindfulness and self-compassion can help individuals accept their bodies and experiences, reducing depressive symptoms and fostering confidence in social interactions.

The Importance of Health Literacy and Specialty Care

Understanding NF and maintaining regular contact with healthcare providers are essential for managing the condition and its mental health implications. Specialty clinics and centers of excellence offer coordinated care and expert guidance, reducing anxiety and improving overall well-being. View CTF's list of clinics specializing in NF care. Health literacy empowers individuals with NF to take control of their health and enhances their psychological resilience.

Living with NF presents unique mental health challenges, but with the right support and strategies, individuals can build resilience and improve their quality of life. By fostering awareness, enhancing knowledge, and developing coping skills, people with NF and their families can navigate the complexities of the condition with hope and strength.

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