Rare, genetic eye disorder takes Pocahontas man's sight - WFXG FOX54 Augusta - Your News One Hour Earlier

Rare, genetic eye disorder takes Pocahontas man's sight after 22 years of 20/20 vision

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POCAHONTAS, AR (KAIT) - Within months, Pocahontas resident Aaron Jansen lost his ability to read, drive, even recognize familiar faces. But, life for Jansen wasn't always that way.

"Had 20/20 vision til about a month or two before I turned 22. Then it started hitting me," Jansen explained. "I was starting to have trouble seeing the board and my books and stuff like that."

At the time, Jansen was studying at Black River Technical College in Pocahontas. He said friends had also noticed the difficulty he was having seeing things. Jansen said they were the first to suggest he visit the eye doctor.

But, I was stubborn and didn't do that. Then on my 22nd birthday I had to get my drivers license renewed. They made me take the eye exam and I couldn't see anything in it," Jansen explained.

Jansen then went to an eye doctor in Pocahontas who confirmed that he'd lost all central vision in his right eye. However, they weren't sure why it was happening. From there, Jansen visited multiple specialists and underwent various tests to determine what was wrong. At one point, doctors thought his vision loss could be due to a brain tumor.

"It was terrible. Thoughts of, 'Heck, I may not be here this time next year.' You know, all kinds of thoughts just started running through my head. I didn't know what to think or what to expect...but I was scared at one point."

Finally, a specialist in Little Rock was able to tell him why he was slowly going blind.

"Dr. Chacko diagnosed me with LHON and by that point I'd lost nearly all central vision in both eyes," Jansen said.

Jansen explained that while he is legally blind, he can still see some things, "I can still distinguish colors pretty much for the most part... and I mean, I can make out shapes just fine." Jansen said the easiest way to explain what he can see is that "...a piece of the puzzle is missing. Everything I see is a blur, only from so far away, I'm light sensitive."

We visited with Dr. William Sawyer at Southern Eye Associates in Jonesboro. Dr. Sawyer is one of four corneal specialists in the state. He explained that LHON is hereditary.

"It's passed on from mother to child. There's a lot of people that actually have the mitochondrial gene for it but don't have the disease," Dr. Sawyer said. 

He told Region 8 News that roughly one in 4,000 Americans are living with LHON.

"They can't read very well, they can't drive, they have trouble recognizing faces. But their peripheral vision is maintained. They can still see out to the sides so they're able to walk around normally."

Now 24 years old, Jansen said life was difficult for a long time after learning he had LHON.

"For a good year, year and a half, I did nothing. Didn't know what to do, how to do it. Didn't know anything about this technology. I just sat around depressed," he explained.

That was until Jansen learned his younger cousin was beginning to show the same symptoms of LHON as well.

"That's when I got up and said it's time for me to do something. You know, if he's got it, I can't let him see me like this."

Jansen then went to World Services for the Blind in Little Rock where he not only learned about technology that could help him, but also learned something about himself.

"I realized that I was really blessed to have the sight I do have," Jansen said.

Jansen is now going back to school at BRTC, using technology to help him in class.

"I can blow stuff up really big to where I can see it, kind of. It talks to me, reads everything back to me," Jansen told Region 8 News. He's also living on his own.

"The only thing I'm limited to is driving now."

Jansen is also now part of a research group in Miami, Florida. He said the study group shows how rare LHON is. "The study is so far along that now they're just waiting for the FDA to approve a cure. You know it's gotta be rare when there's only 100 people in a study."

He said the findings for an LHON cure are promising.

"I think about a month ago they were taking everything to the FDA so hopefully that'll turn out good. I mean, they've got a cure they just can't do anything with it until the FDA approves it."

He's also explained that he's not getting his hopes up.

"Me, at my age, there's nothing more that I'd love to do than be able to drive again, but at the same time...I've accepted it. It doesn't bother me any more."

For now, Jansen said just wants people to realize something about him and other visually impaired people in the area..

"It freaks people out to see people walking with a cane around here," he said. "You tell someone you're blind...it scares them. "They don't know what to do. Now just 'cause I've lost my sight doesn't mean I'm not a person anymore," Jansen said.

Jansen's cousin also just got word from Miami that he is, in fact, also affected with LHON.

His family is also trying to raise awareness for the disorder by selling LHON t-shirts. If you're interested in purchasing a t-shirt, you can email Aaron's Aunt Jeanie Weisenbach at Jeanielew88@hotmail.com for more information. 

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