Out of Sight: The Shocking Discovery of a Teen's Hidden Blindness
Navigating Life with CVI: A Mother's Journey to Understanding and Advocacy
In an enlightening and deeply personal episode of our podcast, we had the privilege of hosting Stephanie Duesing, a mother who embarked on an extraordinary journey after discovering her son's condition, Cortical/Cerebral Visual Impairment (CVI), well into his teenage years. Through her story, we delve into the complexities of CVI, the most common yet underdiagnosed cause of visual impairment in the developed world.
A Late Diagnosis: Stephanie's Discovery
Stephanie's son, Sebastian, was an exceptional child by all accounts. A gifted student with remarkable academic achievements, athletic prowess, and artistic talent, there was little to indicate the challenges he faced with his vision. It wasn't until a chance encounter with old photographs that Stephanie encountered the startling revelation – her son couldn't recognize his own face. This moment catapulted Stephanie into the world of CVI, a journey of discovery, diagnosis, and, ultimately, advocacy.
The Challenge of Recognition
CVI differs from ocular blindness, resulting not from problems with the eyes themselves but from the brain's inability to process visual information correctly. Stephanie emphasizes that CVI can manifest in various ways, depending on the specific brain damage. For Sebastian, it meant he could read words, numbers, and simple shapes but not recognize faces, objects, or even his surroundings.
Navigating the Medical Maze
One of the most harrowing aspects of Stephanie's story is the struggle to secure a proper diagnosis for Sebastian. Despite visiting numerous specialists, the family encountered disbelief, dismissal, and even hostility. The absence of a diagnostic code for CVI makes it challenging for medical professionals to acknowledge and understand the condition, leading to a lack of training and awareness.
Enlightenment through Adversity
Stephanie's tenacity and determination to understand and advocate for her son shine through as she navigates these challenges. Her journey highlights the crucial gap in our medical system's handling of CVI and the pressing need for awareness and education among medical professionals and educators alike.
Music and Movement: A Mother's Intuition
Stephanie, a music teacher, instinctively integrated music and movement into Sebastian's daily routine from an early age, not realizing at the time how instrumental this would be in his development. Music, she explains, is not only a universal cultural element but also a vital tool for neurological development, aiding in creating connections between the brain's hemispheres and supporting balance, coordination, and cognitive growth.
Advocacy and Hope
Through her experiences, Stephanie has become a vocal advocate for CVI awareness, pushing for research, visibility, and change in medical protocols. Her efforts, alongside those of institutions like the Perkins School for the Blind and initiatives like CVI Scotland, are pioneering strides toward understanding CVI and supporting those affected by it.
Conclusion: A Call for Awareness and Action
Stephanie Duesing's journey is more than a personal narrative; it's a call to arms. It underscores the urgency for increased research, awareness, and support for CVI, urging parents, educators, and medical professionals alike to advocate for change. As we learn from Stephanie's resilience and Sebastian's remarkable life, it's clear that understanding and supporting CVI is not just a medical necessity but a societal imperative.
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