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Wolfram Syndrome


Ellie White

Ellie White Foundation


My name is Ellie White. I have an ultra rare genetic disorder called Wolfram Syndrome.  It is an autosomal recessive disorder caused by two genetic mutations in the WFS one chain. WS causes type one diabetes, progressive vision, loss, progressive, hearing loss, progressive coordination, loss, and eventually brainstem/breathing difficulties. It has a life expectancy of 35 years but research is being done to extend that. Type one diabetes has essential supplies, such as an insulin pump, that are not accessible for visual impairments. And the essential accessories needed for potential. Correction of hearing loss are also not made for easy visual accessibility. Research needs to be done and needs to be made accessible for all impairments.