Global Usher Syndrome Awareness Day

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First global Usher Syndrome awareness day - 19th September - Molly Watt, a young woman affected by the rare condition Usher Syndrome, talks through some of the issues she faces, to promote first global Awareness Day.

Usher syndrome is a relatively rare genetic disorder caused by a mutation in any one of 10 genes resulting in a combination of hearing loss and visual impairment, and is a leading cause of deaf-blindness. Other names for Usher syndrome include Hallgren syndrome, Usher-Hallgren syndrome, retinitis pigmentosa-dysacusis syndrome, and dystrophia retinae dysacusis syndrome. Usher syndrome is incurable at present.

In 2015, the Usher Syndrome Coalition declared the 3rd Saturday in September as their global "Usher Syndrome Awareness Day." The day falls near the autumnal equinox in the northern hemisphere, marking the start of days that contain more darkness than light - a powerful metaphor for the threat of Usher syndrome and why they aim to tell the world about USH at this time each year.

Usher Syndrome affects hearing, vision and balance. It was discovered by Scottish Ophthalmologist Charles Usher in 1914. To date there is no cure. Many of those affected use hearing aids or cochlear implants to access sound and are able to communicate with speech. Some use sign language.

Molly Watt is 20 years old and lives in Berkshire - she was diagnosed with Usher Syndrome at 12 years old. She is a charity worker and is looking to be a self-employed motivational speaker. She was born hearing impaired and has been wearing hearings aids since she was 18 months old.

The onset of blindness and her hearing impairment has impacted Molly's life in profound ways:

"I had to quickly find strategies to get about without hurting myself. I would often walk into door-frames, and have bruises all down my arms and legs a lot of the time! I lost self-confidence, and at points did not feel I could ever be fully accepted by somebody. It was incredibly difficult to get a job."

Molly was recently issued with a pair of new Smart Hearing aids, ReSound LiNX that she controls using her iPhone and Apple Watch through an app. The app is called ReSound Smart and is the first that allows hearing aid wearers to control their instrument from their new Apple Watch. Its available for free from the App Store.

Previously talking on the phone proved very difficult:

Not anymore. "It was a real "wow" moment when I made my first call to my Dad, via my Apple Watch and my new smart hearing aids," comments Molly. "His voice came straight into my ears. He sounded different, so much clearer than before, it dawned on me, I'd never heard my Dad's real voice before. My Mum, ever faithful support and chauffeur, sat beside me sounded totally different. Even I sounded different to myself."

"With the use of the app I have access to a system that I can alter to suit various environments. In a room full of people who are asking me questions after my talks, I am able to locate where the voices are coming from. It is the first time ever that I have been able to locate sounds. Out and about the advantage of being able to locate noises means I can avoid obstacles when walking around my home town with my guide dog."

"And when out with friends, I can use the app to alter background noise so I can focus on the person in front in busy pubs, restaurants and social areas."

Molly likes the sound quality of her new aids:

"I have a "favorite' setting on the app that I use most days. This setting has the volume a little higher, the bass higher too and the treble is lower. I have learnt more about my own hearing because of this app. With this setting the quality helps me gain more access to what is happening around me."

Attribution/Source(s):

This quality-reviewed article relating to our Disability Awareness section was selected for publishing by the editors of Disabled World due to its likely interest to our disability community readers. Though the content may have been edited for style, clarity, or length, the article "Global Usher Syndrome Awareness Day" was originally written by BoroughPR Ltd., and published by Disabled-World.com on 2015/09/16 (Updated: 2020/09/02). Should you require further information or clarification, BoroughPR Ltd. can be contacted at boroughpr.co.uk. Disabled World makes no warranties or representations in connection therewith.

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