Stories That Inspire Us welcomed to today’s podcast, Stephanie Duesing. Stephanie is the author of "Eyeless Mind: A Memoir About Seeing and Being Seen." In January of 2017, she discovered that her straight A honor 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 education. Her family was devastated and terrified for her son's safety.
Stephanie and her husband felt overwhelmed with guilt at not knowing that their own son was blind, and utterly baffled at the impossibility of the situation, they embarked on a journey to find answers.
Stephanie’s book is a true story and a testament of how an ordinary person made a major medical discovery in the field of visual neuroplasticity and the horrific medical malpractice and abuse they experienced trying to get a diagnosis for what turned out to be a common visual impairment.
Stephanie’s 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. Although Sebastian's neuroplastic adaptation to his neurological visual impairment is unique, his actual condition is common and is poorly understood.
Cerebral/cortical visual impairment (CVI) was identified as the number one cause of visual impairment in the developed world more than ten years ago and still doesn't have a diagnostic code. There are tens of thousands of people in the U.S alone who have CVI, and they are struggling to gain access to diagnostic, educational and habilitative services. This is tragic and a true public health crisis.
Stephanie is on a mission to end the discrimination against people who have CVI. As I learned from Stephanie during her podcast, this is a common visual impairment that routinely is misdiagnosed. Unfortunately, many people are commonly misdiagnosed with autism, intellectual disability, as well as behavioral and emotional disorders.
No doubt that Stephanie has and continues to raise awareness about CVI so that no other families have to go through what she and her family experienced. The love, respect and admiration of this Mom - priceless in helping others!
To connect with Stephanie, please check out her website:
Let me know what you thought of today’s episode. Please leave me a voice message through my website. Also, If you are interested in sharing your story, please go to my website and “register as a guest”.
https://www.podpage.com/stories-that-inspire-us/
Thank you Stephanie - Stories That Inspires Us!!
