Making a Positive Impact for the Usher Syndrome Community
Advocacy Mani G. Iyer was born and raised in Mumbai, India. He acquired his first hearing aid at the age of 24 and lip read all the way to graduate school. He was diagnosed with Usher syndrome type II at the age of 28.
Mediaplanet: You became deaf by the age of 4 and night-blind by the age of 12. How did you cope with this and what made you prevail over this disease?
Mani G. Iyer: Having the loving support of parents and teachers, a keen interest in academics and reading, along with humor and a healthy social life made my early years pleasant. In my later years, my interest in software engineering and poetry and services from the Massachusetts Commission for the Blind have all helped put Usher syndrome in the background.
MP: What’s the biggest misconception when it comes to Usher syndrome?
MI: Every Usher syndrome case is not the same. There is a wide variation in the progression of symptoms. The spectrum of vision loss, hearing loss and balance issues and the rate at which it progresses differs from individual to individual.
MP: How important is early identification of Usher syndrome?
MI: It is critically important to get an early diagnosis. It is possible to be fitted with hearing aids or cochlear implants at an early age that can help speech development and facilitate learning. There is also a lot of exciting research in the field of gene based therapy which is most effective at an early age.
"Every Usher syndrome case is not the same. There is a wide variation in the progression of symptoms. The spectrum of vision loss, hearing loss and balance issues and the rate at which it progresses differs from individual to individual."
MP: What types of technologies are available to people who live with Usher syndrome?
MI: Screen reader software like Jaws and VoiceOver enable one to interact with the computer and mobile devices. There is a plethora of accessible apps that make it easy to read books and documents, browse the web, play games and help with mobility. There are several Braille-based technologies available as well.
MP: Tell us how you came about developing the international Usher Syndrome Registry and how it helps bridge the gap between researchers and families in need.
MI: Mark Dunning, chairman of the Usher Syndrome Coalition, told me that researchers were having a tough time finding participants for clinical trials. We both agreed that the first step towards finding a cure would be to build a registry. I decided to volunteer my software development skills to create the registry. The registry is key to accelerating the pace of research to find a cure for Usher syndrome. Since the effort for finding a cure is global, the registry has been translated to many languages.
MP: What type of impact do you think you have made on the Usher syndrome community?
MI: I believe the registry is instrumental in furthering research and informing families of the latest developments towards a cure. The family network, which is part of the same website, helps connect people with Usher syndrome. My personal journey has been challenging, yet rewarding, and I hope it serves as an inspiration to others.