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After a decade of poor vision, teen learned he had a rare eye disease

Charlie had trouble focusing in school. Then, his eyesight worsened.
/ Source: TODAY

When Charlie Diehl was 5, he struggled to read the board at school, frequently rubbed his eyes and his attention wandered. His parents took him to the doctor who diagnosed him as being nearsighted and fitted Charlie for glasses.

At first, his sight and behavior improved and his parents felt relieved. But then his problems began again and it took them a decade to truly understand what was behind Charlie’s inability to focus.

“We thought we had solved it,” Sherri Diehl, of Columbus, Ohio, told TODAY Parents. “As he got a little bit older, I got more feedback that perhaps he wasn’t paying attention and maybe he wasn’t looking at the board.”

From ages 5 to 16, Charlie Diehl couldn't see the board and struggled to pay attention. While his family thought it was ADD and poor eyesight, it turned out he had a degenerative eye disorder. Diehl family

That’s when teachers suggested that Charlie had attention deficit disorder (ADD).

“He was an active, growing boy and he wasn’t paying attention,” Diehl explained. “We thought, 'we will have to work with that.'”

Charlie performed well enough in school so his parents didn’t worry too much. For years, they attributed his slight academic and athletic struggles to ADD and poor eyesight. But as he aged, he repeatedly said his glasses weren’t working. The Diehls felt stunned.

“He was getting worse,” she said. “We kept going to the doctor and saying ‘Hey, he is really struggling with this.’”

The eye doctor suggested contact lenses. But when the doctor tried fitting them on Charlie’s eye, the boy recoiled in pain.

“He could barely let the eye doctor help to put the contact in,” Diehl said. “He looked visibly in pain.”

The Diehls began wondering if there was something else happening.

“He was not adapting well to (contacts),” she said. “That is when the first eye doctor recognized he might have keratoconus.”

When Charlie's glasses no longer worked and contacts felt painful, his family knew something else was happening. Diehl family

Keratoconus is a degenerative disease of the cornea that causes the normally round cornea to bulge and become cone shaped while thinning. It occurs in about one of 2,000 people but it could be higher because it’s challenging to detect, said Dr. Ken Beckman of Comprehensive Eyecare of Central Ohio, who treated Charlie.

“Until the condition is fairly advanced, you would not notice it,” he told TODAY. “The initial signs are blurred vision.”

While the condition seems relatively unheard of, Steph Curry, of the Golden State Warriors, admitted this week he experienced it his entire life and attributed recently shooting problems to his increasingly blurred vision, according to an article in Sports Illustrated. While Curry said contacts have helped his sight and improved his play, many people with the condition eventually need a cornea transplant.

But the news of the underlying condition gave the Diehl family some relief.

“All the puzzle pieces sort of matched … Charlie’s vision issues early on and not paying attention in class,” Diehl said. “We had this big ‘ah ha’ moment.”

Beckman knew Charlie, then 16, was a great candidate for cross-linking, a procedure that involves removing the epithelium on the eye, making an abrasion on the surface and adding eye drops called riboflavin every two minutes for 30 minutes several times. Doctors then shine UV light on the eye, activating the riboflavin, which stiffens the cornea “so it stops distorting.”

“The goal of the treatment is to limit progression,” Beckman said. “You are trying to prevent (a corneal transplant).”

After undergoing a procedure called cross-linking, Charlie's eyesight improved so much he doesn't need glasses or contacts to see. Diehl family

But when Beckman first suggested the procedure, the Diehls worried.

“There was a lot to digest,” Diehl said. “We had concerns with Charlie’s age and the newness of the procedure.”

But the Diehls knew if they didn’t act, Charlie’s sight might worsen so much that he’d need a transplant. In April 2017, he underwent cross-linking in his first eye and the second in September of that year.

“Charlie’s eyesight was dramatically improving,” Diehl said. “He doesn’t need any corrective lenses at this time. This was a nice byproduct.”

While Charlie’s enjoying life as a freshman at Ohio State University, his mom hopes others hear his story and advocate for their children.

“We were struggling to get the full answer,” she said. “We listened to him and clearly understood that he was telling us that this wasn’t working.”