Welcome to Beauty Beyond Fear!
This is my journey of navigating the world with Usher Syndrome Type II.
In 2015, I first heard that I was ‘going blind.’ Over the next year and many eye tests later, I was given the full diagnosis of Usher Syndrome Type II, a congenital disorder that affects both a person’s hearing and sight. I had been diagnosed with moderate to severe hearing loss at the age of five, just twenty years earlier. Since then, my hearing loss had remained stable. And I wore glasses, which were low prescription for distance. So what if I bumped into things easily? I was a little clumsy.
It wasn’t until I was referred to a retina specialist and eventually an Usher Syndrome specialist that my view of being ‘clumsy’ rearranged itself to the truth. Those two simple words ‘going blind’ held me in an emotional straight jacket me for months. Once I was ready to face or at least try to see what life would vision loss would be like I felt overwhelmed with trying to find resources and doctors and information about my new future.
How was I supposed to get around, let alone have a job, when I couldn’t drive at night and then at all? Was I the only one out there who felt like this? Had anyone managed to be successful with fading vision and a hearing impairment? How had they done it? What were you when you were too hearing to be deaf and too sighted to be blind?
Slowly I have begun to gather information and join groups, such as the Usher Coalition and the National Foundation of the Blind.
My goal for this blog is to share my experiences with Usher Syndrome to encourage others to learn more about it as well as to provide practical advice from what I have learned for others who are newly diagnosed.
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