Family with rare eye disease may help bring cure for blindness

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by CBS News

khou.com

Posted on June 25, 2013 at 11:45 AM

NEW YORK -- For generations, a single family in Iowa has faced a common enemy: blindness. The cause: a rare, genetic disease, striking dozens of relatives. But now, science could bring a cure into focus.

This story is part of the “CBS This Morning” series “Eye Opening Breakthrough.”

There are many good traits Jerry Jackson wanted to pass on to his kids, but there is one trait he feared that both inherited.

Jackson doesn’t know exactly how many people in his family have the eye disease, but said: “There’s people even at this time that keep coming up with more of this eye disease.”

Although you’d never know it watching him turn and tweak, Jackson has been blind for the past 23 years. He didn’t lose his sight overnight, but rather in a battle that lasted almost 20 years. His eldest daughter Shannon Jackson has been losing her sight for the past eight years, and Jerry Jackson’s other daughter Shawna Williamson has had symptoms for 10 years.

When she was diagnosed, Shawna Williamson said: “I thought it was the end of the world.”

Shannon Jackson said it never entered her mind that she could also have it.

The Jackson family has a rare genetic disorder called autosomal dominant neovascular inflammatory vitreoretinopathy or ADNIV for short. There are only 100 cases reported in the U.S. and 61 of those cases are in Jerry Jackson’s extended family. Different people have been affected in different ways, such as Jerry Jackson’s cousins Jan Katzin and Ron Jackson.

Ron Jackson said: “They told me that I’d be blind, completely blind in five to 20 years. And that was in ‘83. Good Lord been good to me.”

Katzin said: “My mother went blind, my brother went blind, my cousins have gone blind and one of these days, I know I will, too.”

Doctors say it only takes one parent to pass along the disease, so it just kept trickling down. The Jackson family tree became a blueprint for Dr. Vinit Mahajan to isolate the specific gene—the beginning of a possible breakthrough for all types of blindness.

“We call this a Rosetta Stone disease because this family and this eye disease gives you almost every kind of bad eye disease simultaneously over time,” Mahajan said. “And if we can understand how the gene works, and if we can learn to develop new treatments for Jerry Jackson’s family, we really think those treatments are going to extend to other families and other patients where it’s not inherited.”

While blood tests could reveal which of Jerry Jackson’s grandkids have the disease, doctors don’t test kids under 18 when it’s a disease without a cure.

When asked if any of the kids have asked if they could get it, Shawna Williamson said, “I honestly think my daughter thinks it’s normal almost because ever since she’s been about 2 years old, I’ve had eye surgery, her grandpa’s blind, her aunt has it.”

Jerry Jackson doesn’t let his condition slow him down. In addition to the bike shop, he also works at the local grocery store. He answers phones and keeps track of labels, and rarely needs anyone to assist.

“(There) could be worse problems in your life,” Jackson said. “And I just thank the Lord that’s all I got wrong with me at 67 years old.”

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