lovezebras
Active Member
- Joined
- May 26, 2006
- Messages
- 3,991
- Reaction score
- 1
y Jessica Belasco - Express-News
For Sarah and Ellen Browne, being hearing impaired is hard enough.
The sisters, both students at the University of Texas at Austin, were born profoundly deaf. They have cochlear implants but sometimes have trouble understanding what's being said in conversation or miss announcements in class.
But their story is more complex than that. Their deafness is a symptom of Usher syndrome, a genetic disorder that also will eventually leave them legally blind if no cure is found.
An estimated 50,000 people in the U.S. have Usher syndrome. It causes hearing loss and retinitis pigmentosa, a degenerative retinal disease.
"It's pretty rare. We're special like that," Ellen jokes.
Sarah, 23, and Ellen, 20, are speaking out about their condition to promote VisionWalk, a fundraiser for the Foundation Fighting Blindness. It begins at 10 a.m. Saturday at Brackenridge Park. To participate, register at Foundation Fighting Blindness or call (866) 782-7330.
Steve and Carolyn Browne's first two children were born without disabilities. They were in for a shock when Sarah's condition was diagnosed when she was 6 months old.
"The doctor said, ‘You have a profoundly deaf child. Most people won't read above a third-grade level,' " Carolyn recalls.
The Brownes were told it was a fluke, that they wouldn't have another deaf child. But then came Ellen, three years after Sarah, also born with profound hearing loss.
Steve and Carolyn had a choice: teach their daughters sign language or teach them to use the residual hearing they had. They chose to fit the girls with hearing aids and put in tremendous amounts of time and effort to help them not only to cope with their disability but to thrive.
"I don't think people understand the effort it takes to learn how to hear and talk. It's not training the ears and tongue. It's training the brain how to react, identify and process sounds," Sarah explains.
Carolyn spent hours with both daughters, teaching them to associate letter sounds with objects: an airplane begins with an "a" sound, a bus begins with a "buh" sound.
"We bathed them in sound," she says.
Later, Steve and Carolyn had cochlear implants put in their daughters' left ears — Sarah at age 11, Ellen at age 10.
But the implants, small devices surgically placed under the skin that send electric impulses to the hearing nerve, weren't an instant fix. Carolyn homeschooled her daughters for a time to coach their brains to interpret the sounds they were hearing.
Then came another shock: the diagnosis of Usher syndrome.
An optometrist noticed irregularities in Sarah's retina during a checkup when she was about 14 and recommended she visit a specialist. Soon the family learned Sarah and Ellen have retinitis pigmentosa, which causes night blindness and a loss of peripheral vision. Their vision will continue to narrow over time, although they may — or may not — eventually go completely blind.
"It was devastating," Steve says.
The sisters benefit from closed captioning and subtitles when watching TV or movies, and watching facial expressions and lip movements during conversations can help them understand what they're hearing.
"To take my eyes out of the equation, I don't think I'm ready for that," Ellen says.
The sisters have lost some peripheral vision, and they don't drive much at night unless they're in a familiar, well-lit area, but they take large doses of vitamin A palmitate, a form of vitamin A essential to vision, and eat lots of fish high in DHA, both of which can slow the course of the condition. They believe their vision loss isn't as rapid as it might be without nutritional therapy.
Their years of hard work learning to hear and speak have paid off. Sarah will graduate in December with undergraduate and graduate degrees in accounting; Ellen, a junior majoring in kinesiology, plans to work in occupational therapy.
In November, Ellen had an implant put in her right ear. Bilateral implants have improved how she hears, she says, including helping her figure out where sounds are coming from.
Sarah isn't sure whether she'll get another implant.
"I want to see what happens to Ellen first. I got the first one. I was the lab rat," she says, adding, "I'd feel like more of a borg. I just want one of my ears to feel human. I want to feel the wind in my ear."
Also, if a better treatment comes along, she wants the chance to try it.
Though the sisters face big challenges, it helps that they each know what the other's going through.
"When we get old, we can be old and blind together," Ellen says, and they give each other a high-five.
Sisters battle to keep their hearing, sight
Wow...doctors really are stupid sometimes
For Sarah and Ellen Browne, being hearing impaired is hard enough.
The sisters, both students at the University of Texas at Austin, were born profoundly deaf. They have cochlear implants but sometimes have trouble understanding what's being said in conversation or miss announcements in class.
But their story is more complex than that. Their deafness is a symptom of Usher syndrome, a genetic disorder that also will eventually leave them legally blind if no cure is found.
An estimated 50,000 people in the U.S. have Usher syndrome. It causes hearing loss and retinitis pigmentosa, a degenerative retinal disease.
"It's pretty rare. We're special like that," Ellen jokes.
Sarah, 23, and Ellen, 20, are speaking out about their condition to promote VisionWalk, a fundraiser for the Foundation Fighting Blindness. It begins at 10 a.m. Saturday at Brackenridge Park. To participate, register at Foundation Fighting Blindness or call (866) 782-7330.
Steve and Carolyn Browne's first two children were born without disabilities. They were in for a shock when Sarah's condition was diagnosed when she was 6 months old.
"The doctor said, ‘You have a profoundly deaf child. Most people won't read above a third-grade level,' " Carolyn recalls.
The Brownes were told it was a fluke, that they wouldn't have another deaf child. But then came Ellen, three years after Sarah, also born with profound hearing loss.
Steve and Carolyn had a choice: teach their daughters sign language or teach them to use the residual hearing they had. They chose to fit the girls with hearing aids and put in tremendous amounts of time and effort to help them not only to cope with their disability but to thrive.
"I don't think people understand the effort it takes to learn how to hear and talk. It's not training the ears and tongue. It's training the brain how to react, identify and process sounds," Sarah explains.
Carolyn spent hours with both daughters, teaching them to associate letter sounds with objects: an airplane begins with an "a" sound, a bus begins with a "buh" sound.
"We bathed them in sound," she says.
Later, Steve and Carolyn had cochlear implants put in their daughters' left ears — Sarah at age 11, Ellen at age 10.
But the implants, small devices surgically placed under the skin that send electric impulses to the hearing nerve, weren't an instant fix. Carolyn homeschooled her daughters for a time to coach their brains to interpret the sounds they were hearing.
Then came another shock: the diagnosis of Usher syndrome.
An optometrist noticed irregularities in Sarah's retina during a checkup when she was about 14 and recommended she visit a specialist. Soon the family learned Sarah and Ellen have retinitis pigmentosa, which causes night blindness and a loss of peripheral vision. Their vision will continue to narrow over time, although they may — or may not — eventually go completely blind.
"It was devastating," Steve says.
The sisters benefit from closed captioning and subtitles when watching TV or movies, and watching facial expressions and lip movements during conversations can help them understand what they're hearing.
"To take my eyes out of the equation, I don't think I'm ready for that," Ellen says.
The sisters have lost some peripheral vision, and they don't drive much at night unless they're in a familiar, well-lit area, but they take large doses of vitamin A palmitate, a form of vitamin A essential to vision, and eat lots of fish high in DHA, both of which can slow the course of the condition. They believe their vision loss isn't as rapid as it might be without nutritional therapy.
Their years of hard work learning to hear and speak have paid off. Sarah will graduate in December with undergraduate and graduate degrees in accounting; Ellen, a junior majoring in kinesiology, plans to work in occupational therapy.
In November, Ellen had an implant put in her right ear. Bilateral implants have improved how she hears, she says, including helping her figure out where sounds are coming from.
Sarah isn't sure whether she'll get another implant.
"I want to see what happens to Ellen first. I got the first one. I was the lab rat," she says, adding, "I'd feel like more of a borg. I just want one of my ears to feel human. I want to feel the wind in my ear."
Also, if a better treatment comes along, she wants the chance to try it.
Though the sisters face big challenges, it helps that they each know what the other's going through.
"When we get old, we can be old and blind together," Ellen says, and they give each other a high-five.
Sisters battle to keep their hearing, sight
Wow...doctors really are stupid sometimes
When I was in the mainstream school (both in elementary and high school), I knew about the sign language. I was very frustrated not be able to learn sign language back in the 1955 and 1966. It is all about communication which is very important and it is hard to understand what is going on in the classrooms and elsewhere without no ASL. And are you saying they are way back into the old time and not caught up what the Deaf Culture has to offer? Geez, are we back in the primitive days? 
