Type 1 diabetes is a lifelong disease in most cases, but it can be controlled. People with this less common form of diabetes can lead a full life if they control their diet, check their sugar levels often, take insulin properly, and see their doctor regularly.
“It’s never been easy, but there are so many advantages now that make it easier to manage,” says Joyce Sullivan, 78, a UAB Medicine patient from Ider, Ala. with type 1 diabetes (T1D).
Diabetes is a group of medical conditions that affect how the body uses blood sugar (glucose), which is an important source of energy for cells. Type 1 diabetes is a genetic (inherited) disorder that often shows up early in life, while type 2 diabetes usually is diet-related and develops over time. Type 2 is much more common, making up 90-95% of diabetes cases in the United States, according to the Centers for Disease Control and Prevention (CDC).
Before insulin was discovered in 1921 and used on a patient for the first time a year later, most people with type 1 diabetes didn’t live long, and there were very few treatments. Sullivan, diagnosed with diabetes in 1949, has seen numerous innovations in managing the disease. The tools available to her have changed, but the optimistic and watchful attitude that has kept her healthy stayed the same.
Diagnosis and Early Treatment
At age 5, Sullivan slipped into a coma. The doctors in her small North Carolina town did not identify a specific cause. But her mother, who worked for doctors in various roles, was skeptical that her daughter “just needed rest.”
“My mother physically put me in an ambulance,” Sullivan says. “She knew the owner of the ambulance service, and we went straight to Children’s Hospital in Chattanooga to see an endocrinologist.”
Her mother made the right choice. The doctors in Chattanooga said Sullivan had the highest blood sugar reading ever recorded in the southeast. Sullivan thus began her life managing T1D.
“From a five-year-old eating Hershey’s bars and Butterfingers to eating nothing but veggies — boiled cabbage and carrots, no seasoning — that was not easy,” Sullivan says. She would have to wait until 1962 for her first taste of diet soda, Tab, a “wonderful but hard-to-find” invention.
Her parents moved to Chattanooga, which Sullivan assumes was mostly on her behalf. Her father requested a job transfer, and her mother was able to work for Sullivan’s endocrinologist as a lab technician. They sent their daughter to a camp for diabetic children to make sure she developed healthy habits and awareness and to help her relate to other kids with T1D.
Daily glucose testing in the 1950s was rudimentary and difficult compared to methods available today. Every morning, Sullivan had to take a urine sample to her mother to be boiled in a test tube. Then, a chemical agent called Benedict’s solution was added. The color change they observed would give them a rough idea of Sullivan’s glucose levels.
“My mother really learned how to take care of me, and she trained me to boil syringes, properly take specimens, boil the test tube, and look at the readings,” Sullivan says. By age 7, she was able to give herself insulin shots. “My mother even arranged for me to try a new type of insulin from Denmark, sort of as a guinea pig, and it became widely used later.”
School Routine
At home, her mother did all she could, but at school, Sullivan was mostly on her own. She had no way to test her glucose, so she “went by feel.”
“My teachers knew that if I raised my hand to be excused, I’d be going directly to the cafeteria to get a spoonful of sugar,” she says. She would go to a certain stool, sit down, and wait on a cafeteria worker who knew the routine to arrive with a bowl of sugar.
Sullivan continued to show discipline into young adulthood, when she adjusted her expectations for a college experience. By this time, urine glucose tests had been replaced by blood glucose tests blotted onto strips, and she was taking insulin morning and evening. After enrolling in her dream school, Peabody College in Nashville (later part of Vanderbilt University), she realized that the dorm and cafeteria constraints were not going to work for her condition.
“They only had starch-heavy options in the meal plan, and there wasn’t an option to live off-campus back then,” she says. She returned home, earned a scholarship, and commuted to the University of Tennessee at Chattanooga. “It was the only time my condition kept me from doing anything I intended to,” Sullivan says, “but coming home turned out for the better.” She joined a sorority and later graduated with a degree in education.
New Challenges, New Solutions
While still in college in the early 1970s, Sullivan developed an infection that was not healing due to her T1D.
“They put me through many different types of insulin throughout my youth and young adulthood because I was what they called ‘brittle,’ meaning that my blood sugar was always hard to control.” Her doctors in Chattanooga sent her to the Diabetes Hospital at UAB, the first public, university-affiliated diabetes hospital in the United States. She spent five days in the hospital before returning home and thereafter received her regular care at UAB.
Sullivan enjoyed a career as a middle-school teacher before going back to college for a master’s in counseling and later getting married. In her mid-30s, she lost vision in her left eye. Only by strict blood sugar control and working with her first UAB endocrinologist, Roy Roddam, MD, was she able to maintain vision in her right eye. She is still able to drive today.
Diabetes often interrupted her life, but it never threw her off course. When Dr. Roddam retired in 2002, her diabetes care was taken over by her current endocrinologist, Fernando Ovalle, MD, who today is Director of the UAB Division of Endocrinology, Diabetes & Metabolism. Internist Mark Stafford, MD, became her primary care physician.
Glucose monitoring advances during her prime work years gave Sullivan more flexibility.
“The glucose monitors, the One-Touch kind, might be the biggest leap in convenience I’ve seen for those of us with diabetes.” Introduced in the 1980s, these monitors use a small drop of blood to get a quick digital reading. For years, she kept one monitor in her handbag at work and another at home.
Even as the severity of her diabetes increased with age, new technology made it easier to respond. Thanks in part to better monitoring, Sullivan went from giving herself 2-3 injections per day to as many as eight. Around 2008, she had a conversation with Dr. Stafford about the possibility of using an insulin pump that would help automate her insulin, releasing it steadily throughout the day as needed.
“Although I had heard about these pumps from friends with diabetes, I had been a little resistant, just because I was confident in my old ways,” Sullivan says. “But I was just having too many injections, and it was limiting my lifestyle, so I told Dr. Stafford I was ready to make the change.”
She then went back to see Dr. Ovalle, who started her on her insulin pump and helped her learn to manage her insulin pump. More recently, Sullivan learned to use a newer piece of technology called a continuous glucose monitoring (CGM) device.
“Now it is an everyday habit and a great convenience,” she says. “Of course, I know when to call in and ask for help.”
Personalized Care
Sullivan receives all of her routine care at UAB Medicine. Drs. Stafford, Ovalle, and cardiologist Brigitta Brott, MD, coordinate her care and share insights, as diabetes influences all of her health care. When she broke her ankle two years ago, Sullivan was in a wheelchair for three months. She recalls a personal level of support during multiple calls from Drs. Ovalle and Stafford as she struggled with despair as well as glucose management in the hospital, one leg propped on a large elevation pillow.
“While in the hospital, I knew I needed help managing my diabetes, but not just any physician knows how I respond to things,” she says. “I got on the phone with Dr. Ovalle, and he helped me readjust my pump by phone and talked me through managing during surgery, and of course he helped me make adjustments many times afterward.”
Sullivan knows that help is often just a phone call away. “Even common colds can affect my blood sugar, so I often save myself extra trips to UAB by speaking with Dr. Stafford. I almost always hear back from someone within a day,” she says.
With new conveniences and a positive attitude, Sullivan says anyone with type 1 diabetes can live a normal life.
“To someone diagnosed with type 1 diabetes, I would tell them, ‘It’s nothing to be afraid of; you just have to be cautious in dealing with it,’” she says. “There’s no reason to be unhappy about it. You think you can’t live a normal life with diabetes? Look at how old I am and how long I’ve had it! I’d tell them, ‘Start by getting your injection schedule down, work with your doctors, and then keep living a normal life.’”
Click here to learn more about diabetes care at UAB Medicine.