Living With Glaucoma: I Won’t Let Vision Loss Stop Me
Key takeaways:
Nora Schaffer and her identical twin sister were born with congenital cataracts, a rare birth defect.
They had cataract removal surgery when they were newborns. Then, when they were 8, they were diagnosed with aphakic glaucoma.
Nora is now a 35-year-old global history teacher in New York City. She says her lifelong vision problems have made her aware of how precious her eyesight is.
As a child, Nora Schaffer was surprised to read that a character in a Nancy Drew book couldn’t ice-skate because she had an eye condition called glaucoma.
Nora was diagnosed with glaucoma when she was 8, and she had ice-skated plenty of times. In fact, she had never let glaucoma stop her from doing anything she wanted to do.
Eye problems have always been part of Nora’s life. She and her identical twin, Kristen, were born with congenital cataracts, a rare birth defect. They had cataract removal surgery as newborns. And then, as children, they found out they had developed a side effect of the surgery: aphakic glaucoma.
Cataract surgery left Nora, and her sister, without lenses in both eyes. This condition often causes people to develop high pressure in their eyes and damage to the optic nerve.
"I've gradually lost more and more sight over time," Nora says.
But through all of this — doctor appointments, surgeries, and a lifetime of wearing contacts — Nora has managed her condition and continued to live a full life.
Runs in the family
In 1987, when Nora and Kristen were born with congenital cataracts, their family was familiar with the condition. Their mother had been mostly blind since birth because of the same thing.
“That’s when the family started to ask questions,” Nora says. They started wondering, “Why is this recurring?”
In the last several years, Nora and her mom and sister were part of a study with the National Eye Institute. They learned they have a unique genetic mutation that caused their congenital cataracts.
Nora and her family wonder whether the mutation has something to do with radiation. Nora’s grandfather worked at a nuclear power plant for 10 years, trying to find a way to safely get rid of nuclear waste. Nora says he had always blamed himself for her mother’s blindness. And, after he left the plant, he spent the rest of his life championing cleaner energy sources.
Luckily for the twins, medical treatment had advanced considerably since their mother was born in 1952. Nora and Kristen had cataract removal surgery at 2 and 3 weeks of age and have worn contacts ever since.
“My father put four little contact lenses into screaming babies throughout our childhood,” Nora says.
At the time, it wasn’t standard procedure for babies to wear intraocular lenses. The twins had aphakia, meaning they were missing lenses in their eyes. They also had developed a common side effect of this post-surgical condition: aphakic glaucoma.
Glaucoma damages the optic nerve and is often associated with increased pressure in the eye. Aphakia (or lack of a natural lens) after congenital cataract surgery predisposes a person to developing aphakic glaucoma. And it can get worse over time.
The importance of excellent healthcare and self-care
Ever since her diagnosis, Nora has used medications to treat her glaucoma.
Phospholine Iodide eye drops have been an important medication for her. When Pfizer suspended production of it in 2021, Nora made calls and did interviews to push for its availability.
She has worked on the American Glaucoma Society’s patient engagement committee. Through it, she’s met other people with similar experiences and needs, such as a 14-year-old girl with limited vision and a refugee who fled the Balkans in the 1990s.
Nora has benefited from excellent medical care. It’s also helped that she comes from what she calls a “medically minded family,” with a biochemist for a father and a clinical psychologist for a mother. Even so, finding good care for glaucoma can be a challenge.
“The difference in terms of care can be really, really dramatic,” she says.
Learning to adapt her view
Gradually, over the years, Nora’s vision has deteriorated. She can’t see much out of her left eye, now. But she has learned to adapt.
When she goes to the movies, for example, she always sits on the right side of the screen. That allows her right eye to fill in what she’s missing through her left eye, without having to turn her head and hurt her neck.
Growing up, Nora had to get accommodations at school for things like testing. But strangers didn’t always react well. Seeing how the world can unfairly treat people with disabilities when she was a child made her want to be a champion for others as an adult, she says.
Just like with ice-skating, she hasn’t let her limited vision stop her from doing things. Except, maybe, from driving at night when it’s raining, she says.
Nora got her master’s degree in Scotland and did an extended artist’s residency in the Amazon rainforest. She’s worked in the film and restaurant industries. She’s lived in locations from rural Nevada to Brooklyn, where she currently resides with her cat, Oona. Now, she’s a history teacher and a photographer. And, she says, her vision is “a huge part” of who she is as an artist.
Living with limited vision “is certainly part of who I am and how I see the world,” she says.
“I’ve learned a lot from it. And I wouldn’t want another person’s vision, at this point in my life,” she says. “It’s for that reason that I cherish what vision I have left to an even greater degree.”
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