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New Directions - The Eye-Opening Treatment That Is Changing Lives

New Directions Spring 2016

The Eye-Opening Treatment That Is Changing Lives

Date: March 22, 2016

Dr. Gire with a patient.
Rosalind Robinson, left, of Ellicott City, with Dr. Anisa Gire, an assistant professor of ophthalmology at the Wilmer Eye Institute

Rosalind Robinson clearly remembers the day in 1989 when her life changed forever. Then a 36-year-old middle school teacher, she was driving to work in the pre-dawn hours, when her eyes suddenly began to burn. She instinctively put on her sunglasses, but even then she struggled to keep her eyes open for the remainder of her trip. After suffering through the majority of the day, Robinson asked her principal to find a substitute teacher to cover her final class. She collapsed in her classroom before the substitute arrived.

Robinson, who lives in Ellicott City, spent the next three days in the hospital undergoing a variety of tests, only to be told that no one could pinpoint the problem, let alone recommend a solution. “It had been cloudy and raining for three weeks,” remembers Robinson. “I soon realized that cloudy days would be my enemy.”

For the next few months, Robinson sought help from a series of neurologists and ophthalmologists. To her dismay, no one could find anything wrong. The doctors called her condition “severe photophobia,” an extreme sensitivity to light. Her photophobia was only a symptom, however; it was not a diagnosis.

Frustrated by the lack of answers, Robinson gave up on finding a medical solution. She spent the next 25 years structuring her days around her need to avoid practically every form of light. She wore dark glasses wherever she could, stayed inside based on the time of day and the weather, and forced herself to persevere through the pain that had become a daily part of her life. “It’s difficult to explain how this condition affects someone,” she says. “I am talking about extreme, persistent, intractable pain.” Eventually, through sheer determination, Robinson succeeded in establishing a new, albeit limited, normal. Then in June 2012, her delicate balancing act was upended.

Robinson experienced another acute attack of pain that woke her up in tears. A trip to The Johns Hopkins Hospital in East Baltimore led to another round of visits to ophthalmologists and other eye specialists and eventually a return trip to Hopkins. It was there, in February 2014, where she finally heard the words that would set her on the path to regaining her life: Robinson was suffering from corneal neuropathy, a condition characterized by extreme, unrelenting eye pain and photophobia with no known cause.

Back home, Robinson immediately began to do research. She found an article by Dr. Perry Rosenthal, an ophthalmologist who founded the Boston Foundation for Sight and developed a treatment called PROSE (prosthetic replacement of the ocular surface ecosystem) that was being used to help patients with a variety of severe eye conditions. Robinson reached out to Dr. Rosenthal, who referred her to Anisa Gire, O.D., an assistant professor of ophthalmology at the Wilmer Eye Institute, whose training included a PROSE fellowship.

Robinson’s first visit with Dr. Gire took place in September 2014 at the Wilmer Eye Institute in Bethesda. Like Suburban Hospital and Sibley Memorial Hospital, Wilmer’s Bethesda office is part of the Johns Hopkins Medicine presence in the D.C. region. The Bethesda and Baltimore locations of the Wilmer Eye Institute are among only 12 medical sites across the United States that provide PROSE treatment.

PROSE is a gas permeable device that rests on the white part of the eye and is filled with a non-preserved saline solution that constantly bathes the cornea. “The majority of the patients I evaluate for PROSE are suffering from severe dry eyes or irregular corneas,” says Dr. Gire. “These patients have tried other treatments and have run out of options. For those with severe dry eyes, the device acts like a liquid bandage, reducing light, air sensitivity and pain. For those with an irregular astigmatism, the device masks the irregularity, resulting in improved vision for conditions like keratoconus.”

Dr. Gire has also had great success using PROSE to treat eye symptoms associated with a variety of other conditions, including ocular surface diseases such as dry eye from graft-versus-host disease, Stevens-Johnson syndrome, rheumatoid arthritis and Sjögren’s syndrome, as well as corneal exposure. The device can also be used for patients following cornea transplant or refractive surgery such as LASIK. “The majority of patients who come to me with these conditions are good candidates for PROSE,” says Dr. Gire. “During a consultation, if it appears that the patient will benefit from this treatment, we begin the insurance approval process. Approximately 80 percent of patients receive coverage.”

PROSE devices are customized for each patient. While patients wait for their devices to arrive, they work with Dr. Gire twice per day for several days until they are comfortable inserting and removing the devices and caring for them. Dr. Gire has found that between 80 and 90 percent of her PROSE patients are extremely happy with their results.

“When I first met Mrs. Robinson, she had recently undergone specialized testing at the Wilmer Eye Institute, but all these tests came back normal,” says Dr. Gire. “She had also been referred to the Johns Hopkins pain management clinic and was taking pain medications; still, nothing was helping. Her condition had forced her to retire, and she was spending most of her time confined to her home. I had her try on the devices and the relief from her pain was so immediate that she started to cry.”

Robinson explains that initial feeling: “The first time Dr. Gire put the PROSE devices on my eyes, it was like putting cold water on a hot fire,” she says. “It was the first time in more than 25 years that my eyes felt cool.”

Along with the PROSE treatment, Dr. Gire also referred Robinson back to the pain management team at Johns Hopkins. “While the PROSE devices did not eliminate all of Mrs. Robinson’s pain,” she says, “they made a significant improvement in her quality of life. I knew that we needed to work together with the pain management team in order to manage her condition most effectively.”

A little more than a year after her first visit to Dr. Gire, Robinson reflects on how she has reclaimed her life: “Between the PROSE devices and the medication, I feel liberated. Dr. Gire made it possible for me to get back to doing the things I had been forced to give up. Since I began this treatment, there hasn’t been a challenge that I couldn’t meet.”

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