Blind World


Keratoconus.
Seeing again -- without pain.





May 30, 2004.

By NELLIE KELLY,
The Tulsa World




A young woman who was once blind can now see with the aid of some special lenses. She kept Poison Control on speed dial and the doors locked at all times because she was scared for her 2-year-old's safety.


He tended to get into more trouble than most toddlers whose mothers could catch them before they got hurt. But Cyndee Williams couldn't see him, so he was always in danger.


One day, Brennan escaped, and Williams, who is blind, couldn't find him anywhere. She could hear him, so she headed in the direction of his voice. She pleaded for him to come back and not follow his dog onto Riverside Drive.


As she ran and screamed, she flailed her arms, partly from hysteria and partly to feel her way through a neighborhood she could not see.


A 9-year-old neighbor saw the spectacle and, thinking it was a game, joined Williams in the chase.


The girl caught Brennan just as he was nearing the road.


Williams held her son, who was kicking and screaming, she said.


And the girl led them both back home.


That day, Williams realized that she was in denial about her blindness and that keeping her son at home during the day was not safe. So she and her husband enrolled Brennan in day care, which left her alone in the darkness.


"I had to just sit at home and listen to sermon tapes," she said.


Since she was diagnosed with a degenerative eye disease at 21, she had hoped for a cure. But by last year, she had nearly given up on ever seeing again.


"I had been praying," Williams, 28, said. "And it seemed that there would be no answers."


Her prayers were answered not through a supernatural healing, but by a doctor in Boston, and she calls her sight not just amazing, but also miraculous.


Hidden in the dark In 1997, Williams started having headaches and blurred vision. She was diagnosed with keratoconus (pronounced care-uh-tuh-KO-nus), a thinning of the cornea that distorts a person's vision.


The cornea is the transparent dome-shaped front of the eye. Its surface must be perfectly smooth in order to provide clear vision.


But Williams' disease was making her corneas irregular so that they couldn't focus clearly, even with glasses. Hard contact lenses worked for a while, but they hurt because they rested on the damaged corneas.


As her corneas deteriorated, they became more sensitive. Light, air and blinking all hurt. She pulled the drapes tight and wore dark sunglasses in the house because even the faintest flicker was excruciating.


The pain of wearing hard plastic lenses became unbearable because they were on her ultra-sensitive corneas, and eventually her vision became so bad that the lenses no longer worked, Williams said.


So last year, she took them out for the last time.


She could see only black and white fuzz, but no images. If a person stood in front of her, she could see that something was moving, but she couldn't tell what it was. She couldn't see the big E on an eye chart, no matter how close she stood, and she couldn't tell how many fingers a person was holding up.


"I couldn't do much on my own," Williams said. "Not seeing was horrible. But the thing that gets you down is the pain, mostly with the lenses but even when the lenses were out."


Doctors didn't feel she was a good candidate for a cornea transplant, and they didn't offer her much hope, Williams said.


"Relying on God's grace during that time was so difficult," she said.


Then, one day, her aunt called to tell her about a segment on the Oprah Winfrey Show. A woman on the program said she used to be blind but could see again because of a special lens available only through the Boston Foundation for Sight.


Williams' eye doctor referred her there, and Williams' hopes grew.


"I was so hopeful that it might work," she said. "But my hopes had been blighted so many times."


Through her research on the Internet, Williams learned that a Boston doctor had developed a large, fluid-filled lens that could help patients with a variety of cornea problems.


The Boston Scleral Lens is about the size of a quarter so that it can rest on the white part of the eye, called the sclera, which is not sensitive.


The contact lens arches over the damaged cornea. It is filled with artificial tears, which fill in and hide the imperfections in the cornea, thereby improving vision and cushioning the sensitive area, said Mark Cohen, execu tive director of the foundation.


The liquid refracts light just as the cornea should.


The cornea is the only part of the body that gets oxygen not from the blood but from the tears and air, he said. As a person blinks, liquid goes in and out through channels in the lens.


The concept of using a liquid-filled lens has been around since the 1880s, but until Dr. Perry Rosenthal, the clinic's founder, no one had perfected it, Cohen said.


After a screening at the Boston clinic, Williams inserted a pair of trial lenses while her cus tom-fitted ones were being made.


Immediately, she could see, and when her own lenses were finished, she could see perfectly and without any pain.


She could see a computer and read the words on the screen. She could see her husband and the doctor, and she could look in the mirror for the first time in more than a year.


"It was a miracle," Williams said. "My answered prayer."


The Williamses spent two weeks in Boston as she learned to take out the lenses with a tiny suction cup and to replace them correctly.


While there, the couple ate at an outdoor bistro -- a feat that used to be impossible because the air and sunlight hurt her eyes, Williams said.


"My husband wanted to go to Maine to enjoy the lighthouses," she said. "But I told him, 'Honey, I could go to the sewer,' because everything looked so beautiful."


Embracing the light The Williamses had one more surprise -- this time as they were preparing to leave Boston. They were told to bring tax forms and pay stubs to the business office. And after a few calculations, they were told that the foundation would cover the entire cost of the lenses, about $8,000. Most health insurers won't cover the lenses, claiming that they are experimental or cosmetic.


"I couldn't believe it," Williams said. "I still can't."


About half of patients receive the lenses for free or nearly free, and almost everyone receives some amount of subsidy, Cohen said.


The foundation operates mostly through private donations, he said.


Before she left, she gave Rosenthal, a present.


"I brought him a flower," Williams said. "But I said, 'It doesn't seem fair that you should make me see and all I can do is give you a flower.' And he said that if I go and help someone else, that would be all the thanks he needed."


So in February, Williams accompanied her husband, Dr. Brian Williams, a medical resident, on a mission trip to the African nation of Niger.


There, she prayed with people who had eye problems and put drops in their eyes.


Then, she sent photographs back to Rosenthal so that he would know she was helping others with her new-found sight.


She compares Rosenthal to Jesus because they both brought sight to the blind and hope to the hopeless.


One heard her prayers, and the other was the answer to them, she said.


"I thank God for giving me life 28 years ago and giving it back to me again in 2003," she said.


Every few hours, Williams must take out her contact lenses to clean them, and when she does, the fuzz and pain return.


Every night, she takes them out to sleep.


"I never forget because every night I take out the lenses and am blind," Williams said. "And every morning I see."




End of article.






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