Iowa woman shares her experience with a rare eye condition

One member of an Iowa family with a rare, blinding eye condition described her experience with the disease.

Darlene Katzin and several members of her family have an eye disease known as neovascular inflammatory vitreoretinopathy. She is participating in research aimed at developing treatments for the condition. 
Courtesy of Darlene Katzin

Darlene Katzin considers herself lucky. After all, she’s 74 and still has some sight, albeit limited, in her right eye.

Katzin is a member of what she calls “the blind family,” a large, multigenerational Iowa family affected by a rare eye disease known as neovascular inflammatory vitreoretinopathy, or NIV. The disease stems from a mutation in the calpain-5 gene, which codes for an enzyme that breaks down proteins in some cells in the retina.

Katzin’s mother went blind, as did her brother, cousins and dozens of other distant relatives. “I lived with blind people all my life. We knew what to expect,” said Katzin, who lives in a small southeastern Iowa town with her boyfriend, Ed, and her dog, Tigger.

She began wearing glasses at 14 and has suffered from so many complications along the way she’s lost track. As her vision slipped away, Katzin lost her driver’s license and was forced to give up her job as a housekeeping manager in Pennsylvania and return to Iowa.

A correct diagnosis, at last

But she was never correctly diagnosed until she experienced a blinding hemorrhage more than a decade ago when she was in Iowa City for a college graduation.

“We went to eat at a sports bar, and I was looking at a TV and all of a sudden it was gone. I told my friend, ‘My eye just hemorrhaged.’”

That emergency room visit, and the tests that followed, led to her diagnosis and her introduction to Vinit Mahajan, MD, PhD, who moved this year from the University of Iowa and is now an associate professor of ophthalmology at Stanford.

Katzen said she was glad to participate in his research, which she hopes will help others with conditions like hers.

It isn’t an easy condition to live with. Katzin said she misses being able to drive and the independence a driver’s license brings. “I don’t like being dependent,” she said, reflecting on the time it takes her friend to drive her to the eye clinic in Iowa City, or even to the local Walmart, where she tries to do all of her shopping to save trips.

But she’s eager to emphasize that her plight isn’t that bad.

When she bumps into people, she just explains that she’s blind and couldn’t see them. “I just laugh it off — it’s no big deal,” she said. She enjoys gardening and spending time with her dog and with family and friends.

“If you ask any of my blind relatives, life is good,” Katzin said “Although we do not see, we still have our sense of humor. We still have our hearts of gold. We still enjoy life.”



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