Diabetes Research Connection – The Savvy Diabetic Series, Part 1: Living with Type 1 Diabetes Since 1965
Many people in the Type 1 diabetes community know Joanne Milo as the voice behind The Savvy Diabetic, where she has spent years sharing practical advice, research updates, and resources for living well with T1D. But long before she became an educator and advocate, she was an 11-year-old girl learning to navigate a life-changing diagnosis in 1965.
In this first installment of our three-part series, Joanne reflects on her diagnosis and the remarkable evolution of diabetes technology she has experienced firsthand. In the next two blogs, we’ll explore how she built communities that support thousands of people with T1D and why she is now focused on improving care and representation for older adults living with the condition.
Diagnosis, Coca Cola, and Polka Dots
When Joanne was diagnosed with Type 1 Diabetes (T1D) in January 1965, she had just celebrated her 11th birthday. More than 60 years later, she can still recall every detail of that day.
“I remember everything,” she says. “I didn’t know the word ‘diabetes.’ I thought it sounded like ‘polka dots,’ so I remember thinking, ‘Oh my goodness, I’m going to have dots all over!'”
In the weeks leading up to her diagnosis, Joanne had been unusually tired and thirsty. During a family vacation in Puerto Rico, she drank Cokes constantly, and after returning home she would come back from ballet class and drink an entire quart of orange juice. It wasn’t until she became too sick to attend school that her pediatrician performed a urine test and confirmed she had diabetes.
The diagnosis changed life for Joanne and her family overnight. She and her mother left the doctor’s office with insulin, syringes, and testing supplies, learning to navigate a completely unfamiliar reality.
“My mom cried a lot,” Joanne remembers. “Everything seemed dark in the house.”
As Joanne tried to process the diagnosis, another unexpected change unfolded at home. She had been raised in the Christian Science faith, where reliance on medical treatment is often discouraged, and suddenly her family stopped attending church.
“I had been raised as a Christian Scientist, and suddenly I wasn’t going to church anymore,” she recalls. “The whispers were that if you go to church, they’ll let you die because you’re not supposed to take medicine.”
For an 11-year-old, it was one more confusing and emotional layer added to an already overwhelming day. But despite the uncertainty, her parents made their priorities clear. They embraced the medical care Joanne needed and threw themselves into learning everything they could about managing T1D.
“My parents jumped in 1,000%,” Joanne says.
Although the adjustment was overwhelming, her parents immediately committed themselves to learning everything they could. Her mother learned to give insulin injections, while her father, an engineer, developed meticulous tracking logs and became deeply involved with the local diabetes community and fundraising efforts through the American Diabetes Association.
“It was very disruptive to our family,” Joanne says. “But we all kind of adapted.”
A Front-Row Seat to the Evolution of Diabetes Technology
Throughout her life, Joanne has approached new diabetes technology with curiosity and optimism. While some people are hesitant to try the latest devices, she has always been eager to see how innovation could make life with Type 1 diabetes a little easier.
“My trajectory all the way through has been that if there’s something better, give it to me. I want it.”
That mindset began early. In 1970, when Joanne was a junior in high school, her parents purchased one of the first home glucose meters for about $500 out of pocket, despite the lack of insurance coverage. The device plugged into the wall and used a pin analysis system to estimate blood glucose levels. By today’s standards it was bulky and only marginally accurate, but it represented a major leap forward from urine testing.
When she went to college a few years later, Joanne upgraded to the LifeScan portable glucose meter. It could be carried with her and delivered a result in about 45 seconds, giving her greater independence and a glimpse of what the future of diabetes care could look like.
Decades later, in 2004, Joanne transitioned to a Deltec Cozmo insulin pump after finding it increasingly difficult to manage her glucose levels with multiple daily injections. Together with her husband, a design engineer, she explored pump profiles and data tracking to better tailor her care.
In 2006, she attended a presentation about an emerging technology called continuous glucose monitoring and immediately turned to her husband. “I need that,” she remembers saying. Soon after, she became one of the earliest people in her county to use the Dexcom STS continuous glucose monitor. The technology was still in its infancy, and she jokes that its accuracy was so inconsistent she once described it to a room full of physicians as “a random number generator.”
Her enthusiasm for innovation didn’t stop there. In 2014, Joanne discovered Nightscout, an open-source project that allowed people to remotely display and share continuous glucose monitor data. Excited by its possibilities, she hosted one of the first Nightscout build events in Orange County, bringing together participants from across the country to assemble the hardware and software needed to run the system.
When she learned about Loop, an open-source automated insulin delivery system, in 2016, she once again embraced the challenge, even tracking down an older Medtronic pump on Craigslist so she could build the system herself. Two years later, recognizing that many people were teaching themselves these technologies with little formal support, she founded a local Loop users group. During the COVID-19 pandemic, that effort expanded online and evolved into Loop and Learn, which now serves more than 14,000 members worldwide.
Looking back, Joanne’s journey mirrors the remarkable evolution of diabetes care itself. From urine testing and early blood glucose meters to insulin pumps, continuous glucose monitors, and open-source automated insulin delivery systems, she has spent decades embracing new ideas and helping others do the same.
No one should have to navigate T1D alone
Joanne’s willingness to experiment with new ideas eventually extended beyond her own care. She became involved with emerging diabetes technologies, connected with others exploring innovative approaches, and helped foster communities where people could learn from one another.
For Joanne, staying informed has never been just about keeping up with the latest gadgets. It’s about improving quality of life and empowering people with T1D to make informed decisions about their own care.
After more than six decades with the condition, she has witnessed extraordinary progress firsthand. Yet she believes one of the most important lessons remains unchanged: no one should have to navigate T1D alone.
In the next installment of this series, we’ll explore how one unexpected medical emergency inspired Joanne to turn her personal experiences into educational resources that have helped thousands of people better prepare for life with T1D.
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