How can you be blind and not even know it? Stephanie Duesing is an author, speaker, and international advocate for people who have CVI.

In January of 2017, she discovered that her straight A honors student, genius artist, and water polo-playing son Sebastian was almost completely blind and no one knew, not even Sebastian himself. He was fifteen and just about to enroll in driver's ed. We were devastated. Terrified for her son's safety, overwhelmed with guilt at not knowing that her own son was blind, and utterly baffled at the impossibility of the situation, she embarked on a journey to find answers.

Her book Eyeless Mind: A Memoir About Seeing and Being Seen is the true story of how she, an ordinary music teacher, made a major medical discovery in the field of visual neuroplasticity and the horrific medical malpractice and abuse she experienced trying to get a diagnosis for what turned out to be a common visual impairment. Her son Sebastian is the only person in the world known to process his vision verbally, which means that he sees with words like a bat sees with sound. Dr. Lotfi Merabet, the director of the Laboratory for Visual Neuroplasticity at Schepens Eye Research Institute, associate scientist at Massachusetts Eye and Ear, and associate professor of ophthalmology at Harvard Medical School, published this paper on Sebastian's use of verbal mediation to process his vision in collaboration with Dr. Barry Kran, the head of optometrics at the New England Eye Low Vision Clinic at the Perkins School for the Blind.

Although Sebastian's neuroplastic adaptation to his neurological visual impairment is unique, his actual condition of CVI is common and is poorly understood. Cerebral/cortical visual impairment was identified as the number one cause of visual impairment in the developed world more than ten years ago, and it still doesn't have a diagnostic code within the American medical industry.

Dr. Merabet says that Eyeless Mind is "a must-read for any family facing the challenges of raising a child with any disability."

It is Stephanie’s mission to end the discrimination against people who have CVI.

https://www.facebook.com/stephanieduesingauthor?mibextid=ZbWKwL

https://stephanieduesing.com/

Eyeless Mind https://a.co/d/9N22vvu

https://www.nei.nih.gov/about/news-and-events/news/vision-loss-children-whose-eyesight-may-be-2020-requires-new-diagnostic-and-teaching-strategies

https://www.optometrytimes.com/view/getting-to-the-heart-of-pediatric-vision-loss-and-blindness

https://cviscotland.org/

https://www.perkins.org/our-work/cvi/

https://www.aph.org/product/vision-and-the-brain-understanding-cerebral-visual-impairment-in-children/

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