This Teen’s Vision Loss Was a Mystery—Until a Doctor Asked Him What He Ate
For years, Jerome was losing his ability to see and hear, and became easily exhausted. Could his bad eating habits be to blame?
What’s wrong with me?
The patient: Jerome (real name has been changed), a teenage engineering student
The symptoms: Fatigue, hearing difficulties and vision loss
The doctor: Dr. Denize Atan, a neuro-ophthalmologist at Bristol Eye Hospital in Bristol, U.K.
Jerome was a sweet-natured boy in Bristol, England, who liked playing video games with his friends, skateboarding with his two brothers and attending soccer matches with his parents. At age 14, however, Jerome’s energy waned. He started going to bed early. On bike rides, he had to stop and rest. “Even on walks, he would get out of breath,” says his mother, Mariel. “It worried me.”
She brought him to his doctor, who noted that a blood test showed Jerome was low in B12, and that this could make him tired. The doctor prescribed injections of the vitamin and suggested he eat a more balanced diet. That advice was tough to follow, as Jerome had always been a picky eater. Once, on an overnight class trip, he’d barely eaten for two days because he didn’t like what was served.
When he was 15, Jerome started having trouble hearing what people were saying. His vision also seemed to be deteriorating; he held his phone closer to his face to look at it, and he often magnified the screen to read. An ear, nose and throat (ENT) specialist found no obvious problems, and referred him to an ophthalmologist to look for evidence of genetic disease, as certain inherited conditions can cause both these issues. The ENT also advised the teen to turn down the volume on his headphones—even though Jerome was not in the habit of listening to loud music.
To the ophthalmologist, Jerome’s eyes appeared physically fine. So with no sign of eye or ear abnormalities, Jerome’s doctors considered that his physical symptoms might stem from anxiety or depression. The puzzled family, convinced there was an actual physiological cause, started feeling like no one believed them.
The symptoms worsened. In 2017, Jerome, now 17, had to sit up front in his classrooms so he could see the board and hear the teachers. One day, he missed his bus home because he couldn’t make out the route number.
Out of ideas, his ophthalmologist suggested Jerome consult Dr. Denize Atan, a specialist in vision problems caused by the nervous system. The family was hopeful they’d finally get answers.
An unexpected diagnosis
To Atan, the teen looked outwardly healthy. “He was normal height, but a bit pale,” she recalls. She found a definite loss in the central field of his vision, however, a problem not correctible by using glasses. In fact, Jerome’s vision was so poor by now that he couldn’t even identify the top letter on an eye chart. Atan also discovered his colour vision was reduced. This type of vision loss is most often caused by either a problem with the macula, which is the central part of the retina, or damage to the optic nerve. Neither area appeared unhealthy.
Atan ran a test that involves shining light through parts of the eye to measure their thickness. This revealed a clue that had previously gone undiscovered: Jerome’s optic nerve was thinner than normal. When Atan tested its function using electrodes, she found that the nerve wasn’t working properly. She then determined that even the joint reflexes in Jerome’s limbs were abnormal, indicating a widespread nerve problem.
These discoveries helped tremendously, says Atan. “There are relatively few things that give you an optic nerve problem affecting central vision. The most common is nutritional problems.” Genetic conditions can also paint a similar picture, so Atan sent samples out for testing (which, months later, proved negative for genetic disease). In the meantime, Atan tried another, much simpler test: she asked what he’d eaten in the last 24 hours.
Jerome’s response shocked Atan. His diet mainly consisted of French fries, potato chips, bread and processed meat. Jerome’s lifelong fussy eating meant he had gradually lost tolerance for most food textures. He took in enough calories that he hadn’t lost weight but, for years, he had not been getting essential nutrients.
Atan sent Jerome for tests to rule out malabsorption, but was pretty certain his poor diet was to blame. Lab tests confirmed that his B12 was still low, and other B vitamins were also low. Since these nutrients work together to maintain healthy nerves, the combination of deficiencies had had a devastating impact. “Had things progressed further with no treatment, he would have developed problems with movement and sensation in his legs,” Atan says. “Patients can also develop cognitive and psychological problems.”
Jerome was deficient in other nutrients, too, including insufficient vitamin D, which had contributed to a loss of bone density. He started on dietary supplements. He also met with a specialist in eating disorders for his condition, now identified as avoidant-restrictive food intake disorder, as well as a dietitian.
“After the rough days trying to figure it all out, I’m so happy we took him to Dr. Atan,” says his mother. Although Jerome’s hearing and vision may never return to normal, they are no longer worsening. He wears hearing aids and has adapted.
Most family doctors don’t routinely ask what their patients are eating, notes Atan. “When there are a lot of systems affected and you don’t know what’s going on, it’s easy to think it’s some unknown genetic disease. But it could all be nutritional—and the less you ask about diet, the more you don’t know!”
Next, read about the child whose curved spine helped doctors discover a genetic condition.