Usher Syndrome

On this page, you will find information on Usher Syndrome as well as posts written about my experiences as an individual with Ushers.

What is Usher Syndrome?
Usher Syndrome is a genetic condition that causes hearing loss and vision loss. In my case, I have Usher Syndrome Type 1, meaning that I was Deaf at birth and began to progressively lose my vision in my teens. Vestibular issues are also present - in my case, I did not learn to walk until I was 18 months old. The vision loss is caused by retinis pigmentosa (RP). With RP, night vision is among the first to go followed by peripheral (field) vision. Levels of vision loss varies among individuals with RP and/or Ushers.

Is there a cure?
At this moment, no. There are in fact, several clinical trials being conducted for the three types of Usher Syndrome among with their sub-types. But no 'cure' to stop the progress, let alone reverse it.

The Usher Syndrome Coalition is a great resource, chock-full of information. Do check out their Information Corner for further information and answers to any other questions you might have.


Here is a list of blog posts that showcase my experiences with Usher Syndrome.

"VisionWalk 2016: Order of the JedEYE" 
Link: http://thecreativepensieve.blogspot.com/2016/04/visionwalk-2016-order-of-jedeye.html

"Usher Syndrome: Seeing Stars"
Link: http://thecreativepensieve.blogspot.com/2015/02/usher-syndrome-seeing-stars.html 

"FOMO: The Fear of Missing Out"
Link: http://thecreativepensieve.blogspot.com/2014/09/fomo-fear-of-missing-out.html

"Bucket List: Travels, Eats, and Experiences"
Link: http://thecreativepensieve.blogspot.com/2015/01/bucket-list-travels-eats-and-experiences.html

There will be more posts on this subject in the future. Do stay tuned!