Patient Profiles

David Salazar

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In most ways, 19-year-old David Salazar is a typical college freshman, excited about the future and filled with a sense of independence. What sets David apart from others his age, however, are the extraordinary challenges he faces. David has Usher syndrome, a devastating genetic disorder that robs its victims of their hearing and then slowly takes away their vision as they approach adulthood. It is the leading cause of combined deafness and blindness in the United States.

To many of us, David's challenges might seem impossible to overcome. But, with the support of his family and a remarkably positive attitude, David looks forward to the future.

"The type of Usher's I have causes deafness from birth and causes me to be legally blind," say David. "My field of vision is less than 20 percent of what normal vision is. I will have to face many challenges because of the Usher syndrome, but I will face them.

"When I was 4 months old my parents found out that I was profoundly deaf in both ears. As I grew up and started to go to elementary school, I began to get confused when my family would say they saw something that I couldn't see. When I went outside with my family at night to see the beautiful stars, they kept telling me that they could see millions of stars, while I could see less than 30. When I had to walk around the inside of my house while the lights were dim, I had to use my hand to touch an object to get an idea of where I was in my house because I could not see anything in the dark. I used to trip and fall a lot because of my vision problem. I couldn't see what was above or below my area of vision, which meant I couldn't see what was above me or below me on the ground.

"I was 14 years old when I found out I had Usher syndrome. It was the biggest shock of my entire life. Until then I believed I only had a hearing loss. Finding out about my vision, explained why I couldn't see a lot of stuff my family could see, like the stars in the night sky. I felt like my life would have no meaning and that I was worthless. That is when my father taught me a valuable lesson I will remember the rest of my life.

"My father kept telling me how much he loved me and how special I was. I couldn't understand why he said something like that because I thought I was of no value to him, too. I was very depressed when I thought I couldn't be what I dreamed of becoming. I wanted to be a combat pilot for the Navy. I kept hearing my father say that I could be whom I chose to be. He told me that I was stronger than he could imagine. He encouraged me to use that strength. I decided I could trust and listen to him. He is my hero.

"I am happy now," says David. "I believe my father when he says that I will be successful at anything I decide to do as long as I work hard for it. That is how I have decided to follow the rest of the journey on the road of my life."

Wendy Samuelson

Wendy's hearing loss went undetected until she was 5 years old. At age 7, her parents learned she had Usher syndrome. Although they knew her hearing and vision would deteriorate in the years ahead, they delayed sharing the diagnosis with her until she turned 16 and could understand what was happening to her.

Since she was a small child, Wendy wanted to follow in her father's footsteps and become an attorney. Undaunted by her prognosis, she enrolled at Brandeis University, graduating magna cum laude. She went on to earn her law degree from Cornell University and now practices family law.

Wendy understands the likelihood that her vision and hearing will continue to deteriorate and wonders if she should take a sabbatical and see the world, knowing that someday it might be too late.

"I have a positive mindset. I live each day as it comes and try to be upbeat about everything. But, there are things that I do because I know that maybe I'm not going to be able to hear or see things down the road. So, I do think about taking a few months off to see everything I've always wanted to see.