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Solution to rare disorder gives Kodiak boy new focus on reading, life

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Posted: Sunday, November 25, 2012 9:36 am | Updated: 12:07 pm, Mon Jan 21, 2013.

KODIAK, Alaska - Nels Jensen has struggled with reading his whole life.

Jensen, 16, knows how to read, but for him the words just don't look the way they are supposed to. Now he finally knows why.

Last month, Jensen found out he has Irlen syndrome. The rare disorder is not a problem with the eye, but a problem with the way the brain processes visual information.

People with Irlen syndrome see distorted image when they try to read a white printed page. The distortions can create ribbons or stripes of white through the text or blur words to a headache-inducing extent.

"When light hits the lens of an eye, the eye will take different bands of light and bend it so it hits the right focal point, but the modification doesn't happen naturally for some people," said Barb Robek, an Irlen diagnostician from Anchorage.

For years, Jensen's mother Constance had him undergo tests to figure out why he struggled with reading. He took eye tests, lea rning disability tests and IQ tests, but nobody could provide an answer.

He eventually grew accustomed to living with the problem. When Jenson was required to do read for school, he picked an audio book. When that wasn't an option, he read and re-read texts until he understood them.

When Constance Jensen first heard about the online test for Irlen Syndrome, she was skeptical.

"We have tested, tested, tested him a billion times," said Jensen's mother, Constance. "Nobody could tell us what was wrong, and my mom found this test. I was so tired of testing I said no at first."

The self-test asks about the types of reading difficulties a person experiences.

When Jensen took the test at, he answered yes to every reading problem listed.

"I was really excited when I found out," Jensen said about learning what the problem was. "My whole life I haven't been able to read, and I hit corners. The other day at school I hit a box of lettuce in the cafet eria, and it spilled everywhere."

Running into things and not being able to read are common effects of Irlen syndrome, Robek said.

"Sometimes words are half missing, fall off the page, have a halo, or are blurry and shaky," Robek said. "Some people have light sensitivity, headaches when they read, fatigue when they read or reading comprehension issues."

Robek traveled to Kodiak on Tuesday to provide additional testing and fit Jensen with specialized glasses that use color filters to balance the white on pages. The solution to Irlen syndrome is to wear a specific-colored lens that eliminates the difficulties.

In Jensen's case reading is difficult because he sees rivers of white in the text, which means the white page is more dominant than the black print. The correct color helps overcome that dominance, making the words look the way they are supposed to. It will also help him with his depth perception.

Jensen tried around than 30 different color combinat ions before excitedly saying, "I like this," when he found one combination that made the page easier to focus on.

During the testing, Jensen also learned that he only sees a small portion of text in focus, so he's usually only reading one word at a time. With the colored lenses he will be able to see around four words at a time, allowing him to have better reading comprehension.

Robek will work with Jensen to fine-tune the exact tint that is needed, before sending the glasses to Irlen headquarters in Long Beach, California to be made.

Helen Irlen identified Irlen syndrome in the early 1980s. Irlen observed that some of her students read more easily when a colored page of plastic was placed over the page. She then developed a treatment method using colored overlays and lenses. It is used in over 40 countries around the world.

Robek said Irlen syndrome is common with people who have learning disabilities.

"Forty-six percent of the population with learning problems has Irlen syndrome," Robek said. "Seven percent of the population without learning problems has it."

Robek will be in Kodiak until Friday afternoon, and is offering free tests for anyone who experiences trouble with reading, light sensitivity or headaches.

A standard screening takes around two hours. Robek will first determine if Irlen syndrome is present through a series of tests, and will then determine if an individual shows improvement using color overlays.

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