Keiva Cheney shares her Type 1 Diabetes journey

Keiva Cheney’s life changed overnight when she was unexpectedly diagnosed with Type 1 diabetes or insulin-dependent diabetes. According to the Mayo Clinic, the sources and causes of the condition are unknown. For Cheney, it quickly became a way of life.

Type 1 diabetes, according to the Centers for Disease Control and Prevention (CDC), is a chronic autoimmune condition in which the immune system mistakenly attacks insulin-producing beta cells in the pancreas, leading to little to no insulin production. It requires lifelong daily insulin administration, blood sugar monitoring, and careful management to prevent complications of high blood sugar. It is not caused by diet or lifestyle, can develop at any age, and is typically diagnosed in children or young adults. Today, an estimated 67,933 Georgian adults live with T1D, according to an IQVIA analysis of claims data.  

When Keiva was diagnosed at 22, she was otherwise healthy, had no family history, and believed, like many, that T1D only affects children. Instead, she learned she’d been living with the disease long before symptoms appeared.

Her experience reflects a broader reality: more than half of new T1D diagnoses occur in adults, and 90% of people diagnosed have no family history at all. Now a mom, Cheney is using her platform as a Georgia‑based content creator to share her story publicly and help other families understand the important role that screening plays in detecting T1D early. Cheney says that back in June 2018, she was misdiagnosed six months prior to getting her final diagnosis of T1D. 

“I vividly remember losing so much weight. I was around 140 pounds, and the day I was diagnosed, I was 112 pounds,” she said. “That within itself says a lot, but I was extremely confused because I knew something was off with my body and it wasn’t normal.” Cheney also said she would feel like she was falling asleep driving, which is a big indicator that something was off. She says she had every symptom correlating to T1D: frequent urination, excessive thirst, and heavy thrush. 

“It was an overwhelming and confusing time for me, and when I finally got the diagnosis, while it was also a big sense of relief, it was also devastating,” she said. “Because I felt like what I knew as my normal life was now completely different moving forward. I must manage this by the second, by the minute, and by the hour for the rest of my life.”

Although she says finding out was stressful, Cheney says T1D led her to her purpose and became a catalyst for everything she is doing today. Dr. Shara Bialo, a pediatric endocrinologist and senior medical director of T1D immunology at Sanofi, said the understanding of T1D is actively expanding and that Type 2 diabetes is very different. The primary difference between type 1 and 2, is that T1D is strictly driven by your immune system getting confused and attacking part of itself.

“Type 1 diabetes has multiple stages, the first of which don’t create any symptoms, so it’s happening under the surface, and you would never know it,” she said. “Your immune system erroneously perceives it as a virus or bacteria, so it attacks the part of the body that creates insulin, called beta cells.”

Bialo has also been living with T1D for a long time. She says research used to believe it happens out of the blue and very quickly, but the more they studied and learned, the more they realized the autoimmune attack takes place one to two years before people start experiencing symptoms.

“Stage one is when there’s evidence on a blood test that the Autoimmune System is like a flame. and attacking your insulin-producing cells. These are called diabetes autoantibodies, and if you have two or more of them in your blood, through a blood test, that indicates that you have stage one, type one diabetes,” she said. “When your blood sugars are totally normal, you feel fine, you look fine. However, you have these indicators in the blood, sort of like a check engine light on a car, signaling there’s a problem.”

Over time, she says, it will inevitably progress to stage two, where those autoantibodies and autoimmune attacks are continuing. The majority of people being diagnosed, though, are in stage 3, where the cells that make insulin can’t produce anymore because they are being fought off, which leads to a super high blood sugar, where people often seek medical help. 

While living with T1D, Cheney says she wishes she had known about screening for it because she was going to the doctor for regular checkups for months.

“I was going to emergency rooms, hospitals, and they didn’t catch it. They would check my levels and send me home, but I felt like I was wasting away never getting any blood work done,” she said. “It feels like your entire world is crumbling at the very beginning because it came out of left field, and I had no time for preparation.

Suddenly, Cheney was measuring her blood sugar levels and keeping track of what impacts blood sugar in general. She says it’s not just food and exercise, but stress, menstruation, and illness.

“I give myself insulin through my insulin pump or injection by needle because my body isn’t producing it anymore,” she said. “It requires very careful management because if I give too little, my blood sugars go too high, but if I give too much, it can be very detrimental to my health, like having seizures or even death from overdosing. It’s a delicate balance that’s suddenly necessary to navigate.”

This, she says, is why screening early is crucial, because then you know a bit more about what’s coming and how to prepare, so you’re not dealing with it all at once at the moment. 

Living with T1D for the last 33 years, Bialo says the most important thing is being able to adjust on the fly because, no matter what plan you set, you can do everything right, but everything could still go wrong. 

As a mom, Cheney says she has already decided to get her daughter screened.

“From the time I had her, I went to our pediatrician and asked, ‘When can I get her screened?’ And as a mother, it’s our job to protect our children,” she said. “For me, getting her screened early is also me protecting her, knowing that I had no first-degree family history of T1D, but she does now. My baby girl knows what T1D is, and when my sugar is high, she knows I need insulin; she’s a baby genius.” 

Cheney says she would now tell her eight-year-old self to breathe.

“You must be positive. Being in that moment, no one wants to hear ‘you’ll get through this, be positive,’ because you must let it soak for a second because this is something that came out of left field,” she said. “For me, I would tell myself to breathe, relax, and learn. That’s all you can do.” 

Getting screened early, Bialo says, has many benefits in identifying T1D in its earliest asymptomatic stages. 

“There’s no bigger benefit than just time to take your time, to process, to digest, to understand what it is that’s taking place, to learn how to manage before you find yourself in a crisis situation,” she said. “The majority of people, up to 60% of children, up to 30% of adults, don’t have that opportunity, and they end up presenting in something called diabetic ketoacidosis, which is a life-threatening complication of undiagnosed type one diabetes that can land you in an intensive care unit.”

If we screen and monitor, Bialo said, we keep track of where the blood sugars are going, and years after screening, we can bring the rate of diabetic ketoacidosis, or DPA, from double-digit percentages down to under 5%.

For advice, Cheney says to advocate for yourself because doctors aren’t perfect and can make mistakes.  

“Take that extra step because maybe in your gut you know something isn’t right or you look in the mirror and know something may not be right, you have to learn, read, and share information and resources,” she said. 

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