Usher Syndrome Awareness Day falls on the 3rd Saturday of September every year, close to the autumnal equinox when the days have more darkness than light. The Usher Syndrome Coalition considers this a fitting metaphor for the threat of Usher syndrome and why they “Own the Equinox” every year at this time.
Though it is considered a rare genetic disorder, Usher Syndrome is the main cause of deaf-blindness and the most common condition that affects both vision and hearing. Usher Syndrome is a loss of hearing, an eye condition known as Retinitis Pigmentosa and also includes difficulty in balancing.
Usher Syndrome is categorized into three types:
Usher type I: People with Usher Syndrome type I are born profoundly deaf and begin to lose their vision in the first decade of life. They also show balancing difficulties and are impaired in their ability to learn how to walk.
Usher type II: People with Usher Syndrome type II are not born deaf, but they do have hearing loss. They do not seem to have noticeable problems with balance and begin losing vision in the second decade of life. Vision may be preserved until middle age.
Usher type III: People with Usher Syndrome type III are not born deaf. They experience a gradual loss of hearing and vision and may or may not have balance difficulties.
Usher Syndrome is not curable, however, with the right training and tools an individual who is Deaf-Blind can overcome any obstacle. Early diagnosis is the key to getting the right training started at an early age. Some of the training and tools available include: educational programs, orientation and mobility, Braille literacy, and assistive technology.
If you have been diagnosed with Usher Syndrome, take comfort in the knowledge that you are not alone. Additional support and resources can be found at https://www.usher-syndrome.org/. The training and assistive devices mentioned above will help you not only lead an independent life but thrive as well.Sep 15, 2020