Eyeless Mind: The Incredible Story of a Blind Teen and His Family's Journey to Diagnosis, Recovery & Advocacy for CVI

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Stephanie Duesing, parent, author, educator and advocate, talks about the devastating discovery that her straight-A, water-polo playing, artist son at age 15 was blind--and had been his entire life without anyone, including him, knowing it. Stephanie candidly talks about this discovery, and her family's harrowing journey to get her son a diagnosis and treatment for CVI (cerebral-cortical visual impairment), a common form of visual impairment. We talk about how her son navigated exceptionally through life with the love and support of his family both before and after the diagnosis. We'll dive deep into her family's experience, how there were helpers along the way, and how trusting themselves and their love for one another supported them along the way. And we talk about how stumbling into what was a devastating discovery but catapulted Stephanie  into advocacy in the CVI world, and how this experience forms the basis for her book, Eyeless Mind: A Memoir about Seeing and Being Seen, a must-read for anyone who suspects a family member or friend has CVI, or for anyone who must rely on self-advocacy to get the health care they deserve. Cover art by Stephanie’s son—it’s the cover of the memoir!Resources:Eyeless Mind https://a.co/d/dfD7E9uhttps://stephanieduesing.com/https://www.nei.nih.gov/about/news-and-events/news/vision-loss-children-whose-eyesight-may-be-2020-requires-new-diagnostic-and-teaching-strategieshttps://www.sciencedirect.com/science/article/abs/pii/S0028393221002359https://www.optometrytimes.com/view/getting-to-the-heart-of-pediatric-vision-loss-and-blindnesshttps://cviscotland.org/https://www.perkins.org/our-work/cvi/https://www.pathstoliteracy.org/stephanie-duesing-parent-author-educator-advocate/. --- Support this podcast: https://anchor.fm/melissa060/support

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