Device as small as ‘grain of rice’ offers new hope for rare eye disease
By Jessica Brown
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BOSTON (WCVB) — A new surgical implant tested in Boston is giving hope to patients with macular telangiectasia, or MacTel, a rare eye disease that impairs central vision and makes it difficult to see details.
Heather Harris-Keddy, a patient living with MacTel, said the disease has affected her vision dramatically over time.
“If I close this eye, all I’m seeing is your hair and the walls around you,” said Heather Harris-Keddy, a patient living with the disease for more than 20 years. “I can’t see your face.”
She said she noticed changes in her right eye first, then later in her left.
“And I was always doing this — like, can I see today?” Harris-Keddy said, holding her hand over one eye.
MacTel affects the macula, which is a round area at the back of the eyeball, in the center of the retina.
“The macula is what’s responsible for fine, detailed vision — watching television, looking at faces, and especially reading,” said Dr. Dean Eliott, director emeritus for the retina service at Mass Eye and Ear.
He has treated several cases of MacTel, despite its rarity.
“It starts out by causing some blurry vision, a few little small blind spots right around the center of vision,” Eliott said.
Until recently, there was no treatment for the disease.
“People who had it were severely debilitated,” Eliott said. “I mean, they had significant problems with their central vision, and most progressed to a point where they couldn’t read. They had extreme difficulty watching television and seeing faces.”
Harris-Keddy adapted to the changes as best she could.
“I have magnifying glasses around the house to make sure that I can read directions on boxes and stuff like that,” she said.
But Harris-Keddy worried about the day her central vision would be gone for good.
“And you know, I won’t be able to see again or drive again,” she said. “My whole life will change. My husband’s life will change because I will be more of a burden.”
Her hope came in the form of a tiny implant called ENCELTO, which is the size of a single grain of rice.
Inserted into the eye, the implant generates and delivers proteins that the macula needs to function properly.
“The implant is like science fiction,” Eliott said. “It is actually really hard to believe that this was developed.”
Eliott participated in the clinical trials, which showed that while the implant cannot restore lost vision, it can significantly slow or even stop the gradual loss of central vision.
Last year, the Food and Drug Administration approved the device for patients like Harris-Keddy, who became the first person to receive it at Mass Eye and Ear.
“It’s a very expensive device,” Eliott said. “It’s about $250,000, but it protects someone’s eyesight for life.”
Harris-Keddy said she is grateful — and relieved — to have it now while she still has some vision.
“At least we were able to stop it,” she said.
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