riya Raja’s eyes were not cooperating.
A recent college graduate, she had struggled for months with on-and-off watery, red eyes and sensitivity to light. She found it difficult to look at a computer screen at the medical startup where she worked in Cambridge, Mass., or to focus on the words on a page.
Thinking the symptoms might be due to conjunctivitis, a bacterial infection, her primary care doctor prescribed an antibiotic eye ointment. But Raja’s symptoms didn’t improve.
“I worked from home because I couldn’t handle the lights in the office, I wore an eye patch, and I had to invert the colors on my phone because it was too hard to look at the light,” said Raja, who is now 25. “And my eyes were still constantly watering.”
She wasn’t too worried, though, since after each spell of symptoms, her eyes would go back to normal. Raja figured it was just allergies; she otherwise felt well, without major medical problems, and she didn’t smoke or use drugs.
By November 2013, however, her left eye had taken a turn for the worse; she woke one morning to find it swollen shut. She was visiting family in Texas, and her mother took one look at her and told her she was going to an eye doctor — stat. That’s when Raja met Julie Ngo, an optometrist in a group practice just outside of Houston.
Taking a closer look
When examining the eyes, Ngo said in an interview, “we go from the outside in, starting around the eyelid and eyelashes.”
Ngo (pronounced “No”) was immediately struck by Raja’s watery, red eyes and the fact that Raja could hardly pry open her left eye. “She looked very uncomfortable,” Ngo said.
Upon closer inspection, Ngo noted the film of tears that should smoothly cover the surface of the eye was patchy. And some of the oil glands around Raja’s eye, known as Meibomian glands, were clogged. That was compounded by Raja’s thick, long eyelashes, Ngo said.
“Long, luscious eyelashes aesthetically look wonderful, but they can hold a lot of debris,” she said. Like any hair, eyelashes can trap skin oils and dirt, providing the perfect environment for bacteria to grow.
Then Ngo examined Raja’s eyes under the microscope. Fluorescein dye — which binds to dead or dying cells on the surface of the eye — revealed a 2-millimeter open sore on the clear dome covering the left iris and pupil, called a corneal ulcer. Other parts of the cornea had broken down, too, and extra blood vessels snaked through it. These findings pointed to ongoing eye irritation.
“It looked like a smoldering, chronic sort of problem,” Ngo said. The cornea gets much of its oxygen from the atmosphere, but when it’s under a long-term attack, it sends out chemical mediators that beckon for more blood flow, Ngo said.
Given these findings, Ngo was surprised to learn Raja didn’t wear contact lenses, which is a top risk factor for corneal ulcers. She dug deeper, considering other types of problems that could cause Raja’s symptoms.These included an infection by the herpes virus called herpes keratitis, and an overgrowth of staphylococcus bacteria. Adult inclusion conjunctivitis, from the bacteria that cause chlamydia, was another possibility, but Raja’s symptoms and risk factors didn’t fit.
Another possibility was that Raja’s eye problems stemmed from inflammation, Ngo thought; this could explain why both eyes were affected. Ocular rosacea, a type of the condition better known for causing red skin on the face, might make sense. In addition, because Raja’s ulcer was near the eyelid — where bacteria tend to dwell, thanks to the eyelashes — Ngo wondered whether inflammation from a toxin produced by staphyloccus bacteria could be contributing.
Failed treatment leads to a diagnosis
Ngo started Raja on acyclovir — an antiviral medicine — and steroid and antibacterial eye drops. These would both quell a possible infection and tamp down on eye inflammation. Raja’s response to these medicines would provide key insight into the cause of her problems.
For a few months, her eyes got better; after a few weeks, she had finished the course of acyclovir and antibiotics, then tapered off the steroid drops as directed to avoid long-term steroid use in the eye.
But just a few weeks later, the redness, watering, and light sensitivity returned. An ophthalmologist in Boston — where Raja was working at the time — again prescribed a few weeks of antibiotic and steroid eye drops, and again these medicines alleviated her symptoms. Yet frustratingly, after a few months, her eyes worsened once more, and the vision in her left eye became blurry. Raja had just started medical school at the University of Texas, Southwestern, in Dallas, and she attributed the resurgence of her symptoms to exposure to acrid fumes in anatomy lab.
“My vision got so bad I was having a difficult time driving, and I had to mega-zoom all the text on my computer screen,” Raja said.
That brought her back to Ngo’s office, where she was officially diagnosed with ocular rosacea based on the way her symptoms repeatedly flared after stopping the steroids. Ngo believes the toxic effects of bacterial overgrowth have also compounded the inflammation from Raja’s rosacea — a vicious cycle kept at bay by anti-inflammatory and antibiotic medicines.
In retrospect, the diagnosis of ocular rosacea also made sense because Raja and a family member likely have rosacea of the skin, sometimes known as acne rosacea; the two conditions tend to run in families and overlap. About 60 to 70 percent of the 14 million people in the U.S. with acne rosacea also have eye involvement, and about one-fifth of the time, the disease affects the eyes first. Doctors don’t know what causes rosacea, although genetics and environmental triggers may play a role.
A change in perspective
Today, treatment focuses on keeping Raja’s symptoms in check — and avoiding further eye damage — by quelling inflammation and keeping the eyes clear of bacteria that have likely contributed to it. She takes an antibiotic pill that also cuts inflammation, uses lubricating eye drops, and restarts the steroid eye drops when her symptoms worsen. The stakes are high, as further eye damage could seriously threaten Raja’s vision.
“My main concern is to make sure that I can control [Raja’s] flare-ups, and to make sure that any corneal scarring doesn’t go toward the center of her vision,” Ngo said. “Once that happens, it blocks out a good amount of light that comes in to let you see.”
Indeed, Raja’s eyes sustained permanent damage from years of untreated eye inflammation. Because of her corneal ulcer, the vision in her left eye is a little blurry, like looking through a foggy window. But simply having a diagnosis, and a way to control her symptoms, has been a lifeline, Raja said.
“The most miserable part was not knowing what was happening to my body, and experiencing it over and over again,” she said. “It can be so frustrating to have something happen to you and to not know what it is.”
As a medical student, Raja’s experience has affected how she views her patients.
“As doctors, we have a tendency to write off people with a set of symptoms we can’t characterize with our tools or vocabulary, and we don’t necessarily think about what it’s like to be going through it,” she said.
Adjusting to a lifelong, potentially vision-threatening condition has also required Raja to change her approach to treating chronic diseases.
“Sometimes you have to orient your goals towards management, not towards cure, for a better quality of life,” she said. “If you change your perspective from, ‘how am I going to solve this problem completely?’ to, ‘how can I improve my ability to do the things I want to do?’ it can be a great source of comfort.”
If you have dealt with a diagnostic puzzle that has been solved, either as a caregiver or a patient, please email Allison at email@example.com.