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“We still enjoy life”: A member of a family with a rare, genetic eye condition shares her story

A woman with a rare genetic eye disease called neovascular inflammatory vitreoretinopathy, or NIV, shares her story.

One of my most enjoyable recent experiences at work was my chat with Darlene Katzin. We share Midwestern roots and when we spoke, I pictured her in her home in a small, winter-chilled Iowa town, as the warm sun streamed in my California office. I could hear her pup, Tigger, in the background and I tried, as much as I possibly could, to visualize her life.

The word visualize, which I wrote unthinkingly, jars me. Katzin, who is 74, retains only a sliver of sight in her right eye and is nearly totally blind in the left. Like many members of her family, she has a rare genetic condition called neovascular inflammatory vitreoretinopathy, or NIV.

Before talking to Katzin, who I wrote about after she participated in a recent research project, I had read about NIV. The descriptions, and the pictures, were disturbing. It causes hemorrhages, scarring, cloudy vision, inflammation and a host of other complications. Everyone with the disease, which is exceptionally rare, eventually goes blind.

But after talking with Katzin, who is shown holding her great granddaughter, I had a totally different understanding. Blindness, for her family, is just part of life, which, she is quick to add, is wonderful.

"We all get along fine... I'm not sad or anything about it," Katzin said, admitting that she does miss her driver's license, and the independence it brings.

Bump into a person the store? No biggie, Katzin said. "I say, 'I'm sorry, I can't see."

She lives with her boyfriend Ed and dog Tigger, loves growing flowers and spending time with friends and family.

“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.”

Previously: "At my core, I'm just like everyone else": An anthology of patients' storiesBlood, sweat and tears: How Stanford built a rare disease biorepository in a few days and Precision health: a special report from Stanford Medicine magazine
Photo courtesy of Darlene Katzin

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