A Massachusetts man who says he permanently lost his vision after taking a GLP-1 medication is sharing his story as lawsuits continue to raise questions about whether some of the popular drugs could be linked to a rare form of optic nerve damage.
Boston 25 News reporter Lisa Gresci spoke with Ed Gillen of Dedham, a father of four who spent 39 years working for the state highway department and was also known as a longtime softball coach, after he contacted the station following an earlier report about patients who blame GLP-1 medications for serious vision problems.
Gillen said there was no dramatic warning before his sight began disappearing.
“There’s no warning sign at all,” he told Gresci. “There’s no pain. It just comes.”
Within a matter of weeks, what started as a small speck in his vision ended with complete blindness.
“Boom. Lights out,” Gillen said. “I was completely blacked out.”
It Started With What Looked Like a Floater
Gillen said the first sign appeared around Memorial Day in May 2025, when he woke up on a Saturday morning and noticed what looked like a speck or floater in one eye.
At first, there was little to suggest how serious the problem would become, but his vision deteriorated quickly over the next two weeks.
After several medical appointments and extensive testing, including MRIs, CT scans and biopsies, Gillen was evaluated by a neuro-ophthalmologist.
He was eventually diagnosed with non-arteritic anterior ischemic optic neuropathy, commonly abbreviated NAION, a condition involving damage to the optic nerve that can cause severe and permanent vision loss.
Gillen said his doctor believed his symptoms were connected to the GLP-1 medication Ozempic.
“He ran me through all kinds of tests and said, ‘This is definitely symptoms of taking the GLP-1 Ozempic,’” Gillen told Boston 25.
That remains Gillen’s account of what his physician told him, while the broader question of whether the medication itself caused his blindness is still being contested in litigation and medical research.
Gillen Says He Was Never Warned About Blindness
Gillen said he had taken the medication for about a year to manage his A1C levels before losing his vision.
He knew the drug came with potential side effects, as most prescription medications do, but said permanent blindness was never among the risks he understood himself to be taking.
“I knew there were some,” he said. “Because you hear it on the commercials, you hear it advertised, your doctor tells you them, but not this. Not this.”
That distinction is central to the lawsuit Gillen has now joined against Novo Nordisk, the manufacturer of Ozempic.
His case has been consolidated with other lawsuits before a federal judge in Pennsylvania, where patients are alleging that the company failed to adequately warn them and their doctors about a possible risk of severe optic nerve damage and blindness.
Those allegations have not been proven in court.
Novo Nordisk has said it conducted its own safety studies and found no increased risk of vision loss associated with the medication.
That conflicting picture is important, because Gillen’s experience is serious and deeply personal, but one patient’s case cannot by itself establish how much risk, if any, the medication presents to the wider population.
Nearly Four Decades of Work Ended Suddenly
The loss of Gillen’s sight changed almost every part of his daily life.
For 39 years, he had worked for the state highway department, including operating machinery, and he was only about a year and a half away from retirement when his vision disappeared.
“I was very good at my job,” he told Gresci. “And now I got to learn this, a new job of being blind.”
He now uses a walking stick and relies heavily on family and friends to help him navigate daily life.
Gillen said that support system has been essential.
“Without them, I’m not here today,” he said.
He also attended the Carroll Center for the Blind, where he began learning adaptive skills that could help him live more independently.
That transition may be one of the most difficult parts of his story to understand from the outside, because sudden blindness is not simply the loss of sight; it can also mean relearning how to move through a home, travel, work, manage finances and perform dozens of ordinary tasks that previously required little thought.
Other Patients Are Raising Similar Questions
Gresci reported that Gillen decided to contact Boston 25 after seeing the station’s earlier reporting on other patients who claim they experienced serious vision problems after taking GLP-1 medications.
He said hearing those stories made him feel that what happened to him was not an isolated experience.
At the school for the blind he attended, Gillen said three people in his group of 18 also believed a GLP-1 medication contributed to their vision loss.
Those accounts do not establish causation, but they help explain why the issue is receiving increased legal and medical attention.
The lawsuits now moving forward accuse Novo Nordisk of failing to be transparent about a potential risk that patients say they would have wanted to understand before beginning treatment.
Novo Nordisk, however, disputes the suggestion that its medication has been shown to increase the risk of blindness and has said its own research did not find such a connection.
That disagreement is precisely why the ongoing studies and court cases matter.
Gillen Says His Life Now Requires Constant Adjustment
For Gillen, the legal questions are only one part of what happened.
He said he is still trying to determine how to live financially and practically after losing his sight so close to retirement.
“My next steps financially, and then the living,” he said. “How do I live this?”
He had spent most of his adult life working in a job that required vision and physical independence, while also coaching and taking on roles where other people often looked to him for direction.
Now he has had to adjust to receiving help himself.
There is something especially difficult about that kind of reversal, because the injury does not simply interrupt a career; it changes a person’s sense of competence and independence almost overnight.
Still, Gillen said the people around him have helped keep him going, and he wants to use his experience to make sure others know about what he believes happened.
‘I Want People to Know That This Is a Thing’
Gillen said one of the reasons he chose to speak publicly was that many patients assume a rare complication will always happen to someone else.
That was how he thought before losing his own vision.
“It’s not going to happen to me,” he recalled thinking.
Now, he says people should not dismiss possible risks simply because they seem uncommon or remote.
“Don’t think like that,” Gillen said. “Because everybody’s at risk, and I want people to know that this is a thing and it’s real.”
His warning reflects his own experience and the claims in his lawsuit, rather than a settled medical conclusion about GLP-1 drugs.
The larger picture remains unresolved: Gillen believes Ozempic caused his blindness, his doctor reportedly linked his symptoms to the medication, and other patients have filed similar lawsuits, while Novo Nordisk maintains that its own research found no increased risk.
For Gillen, however, the scientific and legal debate is happening alongside a reality that cannot be undone.
He woke up with what looked like a small speck in his eye, and within weeks the life he had known for decades had changed completely.
Ed spent his childhood in the backwoods of Maine, where harsh winters taught him the value of survival skills. With a background in bushcraft and off-grid living, Ed has honed his expertise in fire-making, hunting, and wild foraging. He writes from personal experience, sharing practical tips and hands-on techniques to thrive in any outdoor environment. Whether it’s primitive camping or full-scale survival, Ed’s advice is grounded in real-life challenges.
