Katherine’s story with Neurofibromatosis Type 1
Neurofibromatosis Type 1 affects thousands, but too few know what it is. Katherine shares what it’s like to live with a rare condition that’s often invisible to others, but impossible to ignore. This is more than a diagnosis, it’s a call for awareness, empathy, and visibility.
24 May 2025

Katherine lives with Neurofibromatosis Type 1 (NF1), a rare genetic condition that causes tumours to grow on nerves throughout the body. She shares the realities of living with an often invisible illness and how she overcomes them. Hear her powerful story of strength, resilience, and self-acceptance.

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Image: Katherine Buckley

Katherine’s fitness quest became more than just a physical transformation; it was also a powerful act of self-reclamation. In the regulated, powerful setting of the gym, she began to rebuild a relationship with her body, which was frequently confounded by the unexpected nature of Neurofibromatosis. Each lifted weight, each mile run, was about more than just building strength; it was also about regaining control after NF1 had taken it away. This newfound discipline also proved to be an effective strategy for dealing with the often-invisible side effects of her condition, such as chronic pain and the emotional toll of living with a visible difference.

Her story is more than just a personal victory; it also challenges cultural narratives about disability and merit. For too long, the default image of health and strength has been limited, leaving little room for those dealing with complex diseases. Katherine actively challenges these prejudices by her uncompromising devotion to her well-being. She embodies the feminist ideal of bodily autonomy and self-definition, demonstrating that strength is not dependent on the absence of conflict but rather on the willingness to confront it head-on. Her experience serves as a compelling reminder that self-care, in its most profound sense, can be a radical act of resistance, allowing people to live freely and unapologetically, regardless of their diagnosis. Her experience emphasises the necessity of creating inclusive environments in which all women feel noticed, supported, and capable of reaching their greatest potential on their own terms.

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