According to a recent post from the Usher Syndrome Blog on the Usher Syndrome Coalition’s website, September 19, 2015 is the first Global Usher Syndrome Awareness Day. The blog is promoting an “Own the Equinox” theme for this new awareness day, created to draw attention to Usher Syndrome, a rare genetic and progressive condition that affects hearing, vision, and balance.
The syndrome was discovered by Scottish Ophthalmologist Charles Usher in 1914, and there is no cure. Many of those affected by Usher Syndrome use hearing aids or cochlear implants to access sound and communicate with speech. Some use sign language.
To help promote the first Global Usher Syndrome Awareness Day, GN ReSound released an announcement that recounted some of the issues faced by Molly Watt, a young woman affected by the condition. Watt, now 20 years old and living in Berkshire, England, was born hearing impaired and has been wearing hearing aids since she was 18 months old. She was diagnosed with Usher Syndrome at 12 years old. She is a charity worker and is hoping to become a self-employed motivational speaker.
According to GN ReSound, the onset of blindness and hearing impairment has impacted Watt’s life in profound ways.
“I had to quickly find strategies to get about without hurting myself,” she said. “I would often walk into door frames, which led to 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 ReSound LiNX² smart hearing aids that she controls using her iPhone and Apple Watch through an app. The app, available for free from the App Store, is called ReSound Smart, which allows hearing aid wearers to control their hearing instruments from an Apple Watch.
Previously, talking on the phone proved very difficult for Watt, but this changed once she got her new hearing aid.
“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,” Watt said. “His voice came straight into my ears. He sounded different, so much clearer than before. It dawned on me that I’d never heard my Dad’s real voice before. My Mum, my ever faithful support and chauffeur, sounded totally different. Even I sounded different to myself.”
Watt reported that with the use of the app she has access to a system that she can alter to suit various environments. In a room full of people who are asking her questions after one of her talks, she is better able to locate where the voices are coming from. Further, Watt says that she can now more easily avoid obstacles when walking around her home town with her guide dog.
Those who wish to learn more about Usher Syndrome and to support Global Usher Syndrome Awareness Day on September 19 are urged to visit the Usher Coalition’s blog and sign up to receive more information about how to help.
Source: Usher Syndrome Coalition; GN ReSound; Molly Watt Trust
Photo credit: Molly Watt, Molly Watt Trust