Personal Experiences

Sydney Colville

The Mary Tyler Moore Vision Initiative has a lofty goal: To halt and reverse vision loss from diabetes. Here’s one woman’s hope for a clearer future.

Several decades ago, blindness and severe vision loss occurred in 40 percent of people with diabetes, but we have made progress since that time. Early detection, better tools to manage type 1 diabetes (T1D), and timely, appropriate treatment can reduce the risk of blindness by over 95 percent. Nonetheless, tens of millions of people worldwide still suffer from limited vision and blindness due to diabetes and the side effects of current treatment methods. There is a real need to redouble our efforts to develop advanced and effective new therapies to restore vision and “cure” blindness in those so affected, and to prevent vision loss in the first place in people at risk.

Through the Mary Tyler Moore Vision Initiative, a special initiative of the Mary Tyler Moore and S. Robert Levine Charitable Foundation and JDRF launched to honor Mary’s contributions to diabetes awareness and research, JDRF is supporting research to find new ways to prevent the development of diabetic retinal disease, arrest its progression to preserve visual function, and restore lost vision.

Sydney Colville

Vision loss steals more than the ability to see

For Sydney Colvill, 48 years of battling T1D has meant unwavering commitment to balancing blood sugars as best she could, only to—as millions experience—lose her own vision due to diabetic complications of the eyes.

Vision loss has stolen much from her: Her nursing career, her peripheral vision, her favorite pastimes of horseback riding and tennis, her overall freedom, and even her choice in pets (“I can handle cats, but I just cannot walk dogs safely anymore,” she said).

All that and still she wakes up every day choosing to live well, despite suffering diabetes’ most feared complication—vision loss due to diabetic eye disease.

But truth be told, she admits, she’d pretty much lost hope for a better future for diabetic eye disease and vision loss.

All that changed for Colvill when, this past September, she attended an event to learn more about The Mary Tyler Moore Vision Initiative.

Drawn there via excitement to participate in the diabetes’ community in person again after the COVID years, she wasn’t expecting much more than a friendly meet up with long-time friends.

But as she stood in that room listening to Mary Tyler Moore’s husband, Dr. S. Robert Levine, speak, a familiar feeling pumped through her veins. And while it wasn’t a magic elixir to clear her vision, she said, it was the next best thing.

“That was the night hope came back into my life. Robert has taken his love for Mary—his complete understanding of what she was dealing with—and used it for me. For all of us,” she said.

Colvill’s diabetes story is similar to Ms. Moore’s.

Like Moore, Colvill was surrounded by forward thinking supporters thanks to her mother’s involvement with JDRF (then JDF; her mother, Jacqueline “Jake” Colvill, started the still-thriving JDRF Houston chapter and went on to be an international leader in diabetes research funding). Like Moore, she has had access to the newest of tools early on and insights on the most promising ways of treating the disease. (“I had one of the very first glucometers,” she remembered, “and I used it often. That was before tight control was really accepted. One doctor said to me of finger stick checks, ‘You’re going to do that twice a day? Why?’”)

Like Moore and millions of others with T1D, Colvill began the decline into life-altering vision loss about a decade into her diagnosis.

She started with determination, and hope

Colvill can remember the moment she was diagnosed with T1D 48 years ago.

She’d been brutally thirsty in the weeks prior. “I was chugging cases of Tab and switched to lemonade to make drinking all that easier,” she remembered of her 10th grade year.

“Then I lost 10 pounds in a week. The doctor said, ‘Give her regular Coke and jello,’ Can you imagine? So my mom took me to the ER and when I went to put my pants back on after being checked, they fell off. Like, to the ground,” she said.

That was the eye opener for the doctors and, in an instant, her life changed with the T1D diagnosis. Colvill’s reaction? To take it on full force.

“I knew it was something I’d have to learn and learn well—and stick to,” she said of living with T1D. Unusual for a 10th grade teenager, true. But Colvill was determined to fight for a long, healthy, and clear-visioned life.

“I always cared and I have always tried,” she said.

But the reality of what “best” looks like in T1D treatment results became clear quickly.

“You try and try. But what can you do about stress? Or pain? They come in life and when they do, I can bounce so high and so fast,” she said.

That led her to embracing Multiple Daily Injections (MDI) decades before medical experts endorsed it. “I mean: I did MDI way before anyone else.”

Complications came along

About a decade into her battle, despite focus on her vision (“I always was aware it was necessary to watch the eyes,”), she began to experience floaters, vision loss, and more.

“I had floaters so I started getting laser [treatments] about 10 years in,” she said. Those were repeated, something doctors now know can impact vision negatively long term when done too often.

“In the dark, it was taking longer and longer for my eyes to adjust,” she said. “Gradually, it was becoming more and more of a challenge.”

She flew to Montana, where smoke from a wildfire had fogged the air. When it lifted, she was excited to take in the view—only to realize she could not see it clearly. “Everything was kind of wavy,” she remembered.

It was officially diabetic retinopathy, and bleeding from the fragile blood vessels that the body creates as an imperfect response to the diminished blood flow to the retina caused by diabetes.

That led to the first of many vitrectomies she’d endure.

She was working at the time in the endocrinology department of Kelsey Seybold Clinic, where her background in nursing and research project management was a perfect fit.

Walking out of work one night after the Montana trip, she stumbled over a speed bump (vision loss can do that to a person), broke her wrist, and struggled with high blood sugars from the stress and pain.

Soon after that, while driving to work after a workout, she said, “BOOM. I had a major bleed [in my eye]. I knew right then things were going to change.”A second bleed came quickly, as did more surgeries. But most of all came a complete change in her life that continues to this day.

Despite her attention to diabetes care, her mother’s dedication to forwarding progress, and their embracing of the best and the new, Colvill, like Mary Tyler Moore, added her name to the list of people who tried their best and still had their vision stolen by T1D.

She was no longer able to do the job she loved and had to leave. Today, she cannot go out at night, recognize a face from more than four feet away, read her own handwriting (“It can take all morning for me to compose a note. And it’s not just about what you can read; it’s how long it takes you to read it,” she explained). There’s no horseback riding and no tennis.

It’s understandable that her hope would fade.

“I’m always optimistic but man, my eyes have just been through so much,” she said.

A light in the tunnel

Now, with her knowledge of the Mary Tyler Moore Vision Initiative and the plans Dr. Levine has to honor his late wife and her battle with near blindness from diabetes, Colvill feels inspired and hopeful—more for others than herself, but even for her own future.

She’s ready to step up, she said, in whatever way she can.

“Oh my goodness: If they ever need tissue to research, I’m your gal,” she said.

“My great hope is I can help prevent this from happening in other lives, and that others never have to go through what I’ve had to go through,” she said.

The Mary Tyler Moore Vision Initiative has solidly restored that hope in her, she said.

She understands how the program not only is fueled by passion, but also has the oomph and reach to do that thing she knows makes a difference in research: Bring minds together.

“The coming together of academia and industry this is making happen—the minds and the technology—is so inspiring,” she said, “and I know from my experience it is exactly what needs to happen.”

“To me, it’s all about not having people have to stop working at the job they love, not have to stop riding the horses they adore, not having to put limits on their lives because of diabetes-caused vision loss,” she said.

That Dr. Levine is heading it up matters much to her, she said.

“His passion and his ability to convey why this is so important, and why vision loss can be so lifechanging to people makes a big difference. It comes firsthand—and you feel that. When I met Robert, it was like: Thank you. It’s the first time I heard someone really get it, but also offer up solutions.”

“When Robert talked about what Mary experienced; losing the ease to just walk across a room without help; or losing dancing. The challenges I have people don’t realize. But Robert does. And he wants to do something about it,” she said.

Colvill intends on continuing to follow and support the Initiative.

And, she’s newly willing to return to some personal hope as well.

“I’m shooting for 30, 40 more years of living,” she said. “And now I’m hoping they can find a way to rejuvenate blood supply to my retina and restore visual function, too. It’s far off but…you never know. I’ve got hope back in my life.”