Heather Napolitano can remember the exact moment her eyesight became a problem.
Napolitano, 39, is a huge college basketball fan and her favorite team is Duke. She, her brother and her husband were watching the Blue Devils play Lehigh University in the NCAA tournament March 22, 2013. At some point in the game, she said, she remembers not being able to see the score in the bottom right-hand corner of the screen.
“When I looked directly at the score, I could see the players moving around, but I couldn’t see the score,” she said.
A little less than five years later, Napolitano has been diagnosed with capillary nonperfusion. The central vision in her left eye is all but gone, and in her right eye, there’s one little speck of clarity.
“I hold that one little clear space dearly,” she said. “Some people might shy away from things because of something like this, but I’m going to keep working with what I have.”
Losing her eyesight wasn’t the first medical issue to plague Napolitano. Diagnosed with diabetes at age 8, she’s been insulin dependent ever since. It’s tough to have that happen at such a young age, especially back then because it involved a lot of shots and finger pricks, she said, but a child can learn to be strong. That experience definitely helped shape how she handles things now, she said.
“My parents have always said everything happens for a reason,” Napolitano said. “Sure, it was hell having diabetes, but my parents didn’t allow me to feel any different.”
Long-term diabetes can cause blindness through diabetic retinopathy, which occurs when high blood-sugar levels cause blood vessels in the retina to swell or leak. Napolitano is very aware of this, but said she despises when people say that’s what happened in her case.
Napolitano said a healthy diet and regular appointments with a doctor go a long way in helping prevent diabetic retinopathy. She prides herself in managing her diabetes well enough as a child to be a track runner in high school – her best time is 2 minutes, 18 seconds in the half mile – who went on to run track in college before a knee injury ended that experience. She’s clearly a person who still takes pride in staying in shape.
In addition to the healthy diet, she said, when vision is lost through retinopathy, laser surgery, which she had, can help shrink swollen blood vessels.
“It’s a problem for diabetics that don’t take care of themselves, but if monitored correctly and caught early, it can be prevented,” she said.
Napolitano said the hardest part of the diagnosis process was not knowing for years. She went to many doctors and tried different procedures to help. She had a time-released steroid implanted in her eye, but that caused high ocular pressure, which can lead to early-onset glaucoma, so she stopped that. She was tested for every kind of antiretinal antibody, but nothing proved to be the answer.
“I wanted an answer so bad,” Napolitano said.
Napolitano’s husband, Dom, who works from home, said one of the problems was that her outer retina is healthy, so tests on that portion of the eye showed nothing.
Napolitano said when her vision loss began, she was a sales rep for Red Bull, which required her to be on the road all the time. “I drove for a living. I was born to work really hard,” she said, catching herself and regaining her composure before starting to cry.
Through all the misdiagnoses – Napolitano was even told at one point her problem was lazy eye, which is clearly not the problem – and the challenges of adapting to a new way life, the couple has stayed strong and forged on, choosing to accept the blindness and raise awareness of its challenges.
Napolitano has been the co-chair for the Foundation Fighting Blindness Philadelphia VisionWalk and is currently the president of the FFB Philadelphia chapter. She’s also started a local fundraising effort, SeeShore Fest, which just celebrated its third annual event in August, raising over $11,000.
These things have given her a purpose, she said. “When a person loses their vision, there’s also a feeling of losing their independence.”
Napolitano said there are other issues. She said she questioned how she could be a good mom to her two kids without being able to the things that moms with full vision do. The couple had to move to Rehoboth from Maryland’s Western shore two years ago to be closer to her parents after she couldn’t drive anymore. Their house always has the blinds pulled because if it’s too bright, anything she can see gets washed out. It’s easier for her to read her cellphone when the images are in the negative. And because she doesn’t appear to be blind, when she asks for help reading something in public, people regularly say something like, “Oh, I’m blind too without my readers.”
Through it all, Napolitano perserveres, with the support of her husband and parents, Jim and Christine Smith. “Every family has to do some shuffling,” she said. “We just have to do a different kind of shuffle.”
Napolitano isn’t sure how her eyesight will be in the future. For now, she said, it seems to have stopped getting worse. She said science is working on gene therapy procedures that may let her see again, but clinical trials are not complete.
In the meantime, Napolitano and her family will continue to attack the issue head on, looking for sources of inspiration like a quote from Duke coach Mike Krzyzewski’s book “Beyond Basketball.”
In the Adversity chapter, near the beginning of the book, Krzyzewski quotes Duke University President Richard Brodhead, who said, “You outlive your darkest day.” Explaining further, Krzyzewski said, "In other words, failure can never be your destination. In adverse circumstances, you must remind yourself that this day is not your last. You will get through it, but can you use it to get better?”