Illinois teen turns rare diabetes diagnosis into a new outlook on life

Mya Abuzir is now a college student living her life with HNF1A MODY, a rare form of diabetes.
Mya Abuzir is now a college student living her life with HNF1A MODY, a rare form of diabetes.

At an age when many tweens swoon over sugary concoctions, one Illinois sixth grader had already learned to study menus with keen eyes more appropriate for someone twice her age. Mya Abuzir was diagnosed with a rare form of diabetes at ten years old. As a middle schooler whose friends frequently spent their money on snacks Mya had to be wary of, being unable to join in the after-school fun made her feel very alone. However, Mya is now in college, and today she is grateful to have received a critical diagnosis at such a young age. In fact, she believes having diabetes has given her a new outlook on health and on life.

Mya’s story started one July afternoon, when she was sitting at the kitchen table with her father, who has diabetes. She was watching him prick his finger and transfer a drop of blood onto a test strip inside a glucose meter. To her 10-year-old eyes, the meter looked like a toy. She asked him if she could “play with it” too; he said she could.

Neither Mya nor her father expected the result they got: her blood sugar level was unusually high. Thinking it may have been something she ate earlier in the day, her parents decided to test her again later. But when the second reading also came back high, they decided to make an appointment with her doctor. Ultimately, she was referred to an endocrinologist who diagnosed her with MODY – maturity onset diabetes of the young.

A rare form of diabetes caused by a single gene

MODY is a type of monogenic diabetes – a class of diabetes types caused by a single gene abnormality. For Mya, the abnormality is found in the HNF1-alpha (HNF1A) gene.

Over time, Mya has gotten very good at explaining MODY to others. “Whenever I tell people I have diabetes, the first thing they ask is, ‘Oh, is it Type 1 or Type 2?’ It’s actually neither!”

While MODY has similar qualities to both Type 1 and Type 2 diabetes, it is distinct from both. MODY is often diagnosed in adolescence, similar to Type 1 diabetes, yet is characterized by a reduction in insulin production, similar to some kinds of Type 2 diabetes. In Mya’s case, her body just doesn’t produce enough insulin.

While diabetes may be a part of my story, it doesn’t define who I am. It’s a challenge I face, but it’s also a part of what makes me strong.

Because monogenic diabetes is rare – affecting only about 3.5% of all patients with diabetes diagnosed before age 30 – misdiagnosis is common.

“Fortunately, my endocrinologist was educated on MODY and diagnosed not only me, but also my father and some other family members who had been misdiagnosed with either Type 1 or Type 2,” Mya said.

Navigating her teenage years with diabetes

When Mya found out she had diabetes, she had just started sixth grade – a life stage that can be difficult for anyone, even without the added challenge of learning to manage diabetes.

“I was the only kid in my class that had diabetes, let alone MODY. At lunchtime, I had to test my blood sugar before I was allowed to go join my friends in the cafeteria,” she said. “It all seemed so unfair.” She also had a lot to learn. Fortunately, learning about nutrition was an important part of the education Mya got from her endocrinologist.

“Usually, a sixth grader wouldn’t be concerned about how many carbs are in a bag of chips, but it did help me figure out what I should be looking for,” she said. She added that now, at 18 years old, “I would be making less healthy decisions on my own if I hadn’t learned about nutrition early on.”

She became accustomed to asking herself questions: Is this a whole food? Was it grown from the ground? Is it processed? How many carbs does it have? Questions like these guided her from those early days navigating coffee shops with friends, through high school when having her own debit card meant more freedom over her food choices, to today – shopping and cooking for herself as a college sophomore.

“I can’t rely on food that my parents make for me anymore,” she said. “I have to make a conscious effort to make healthy purchases. I make sure that the things I put in my cart are things I’ll be proud of later on.”

Turning fear into motivation

Despite her efforts to be mindful of what she eats, Mya can’t escape the mental and emotional aspects of the disease. Having had family members who passed away from diabetes is a constant and stark reminder of the gravity of her diagnosis.

“It’s like a looming dread over my head,” she said. On top of that, there’s the self-talk that has a way of creeping in uninvited: “Is this OK for me? How will this impact my physical health? Am I doing enough?” It’s a lot to deal with at any age, but especially for a teenager.

“But I won’t let fear control me,” she said. “I can’t use it as an excuse to eat whatever I want. I have to turn fear into motivation and use it to keep myself healthy and keep pushing forward.”

And that’s exactly what she does.

Advice for other teens and young adults with diabetes

When asked if she had any advice for other teens and young adults with diabetes, Mya’s face lights up. “That’s my goal: to help others like me,” she said.

According to Mya, perspective is everything. “I like to think of diabetes as an outlook – a new way of looking at how everything we eat is a way of taking care of our bodies,” she said. “It‘s also good to remember that it’s not something you can help. You didn’t cause this for yourself.”

Talking about the disease is also key. In fact, she sees educating others as a means of support.

“Don’t be afraid to let people know. If they seem judgmental, they may simply be uninformed or misinformed,” she said. “Educate them! You might be surprised at how supportive many people will be.”

She said talking about diabetes includes not just what it means, but how it feels. “If you keep everything bottled in, it will affect your physical health and your mental health too.”

Mya is studying biology and pre-med with the goal of becoming a medical doctor to help others with endocrine issues. Transitioning to college life can often bring new challenges for people living with diabetes, and Mya knows that firsthand.

“I’m not going to lie. It’s been a little tough. Stress eating has been a habit recently,” she said. “It’s easy to find myself at the library forgetting to eat.”

Mya recommends making time for light exercise to help combat the stress, even if it’s just a short walk around campus. “But you have to make the time, not find the time,” she said. “Also, make sure you take time to do something you enjoy. I can’t stress enough the connection between mental and physical health.”

Registering with your college disability office is also something she suggests. “For those that may need to step out of class to test their blood sugar or take a test at a later date because of health issues, it can be a great resource.”

Finding empowerment through contributing to ongoing research

Participating in monogenic diabetes research is something that Mya has found empowering. When she was initially diagnosed, her father signed her up for the Monogenic Diabetes Registry at the University of Chicago. After she turned 18, she kept doing it on her own.

“It’s nothing scary,” she said. “I do surveys and join Zoom calls to elaborate on that information. Being part of a research study is something that feels fulfilling because only a small percentage of people have MODY. I love that I am playing a role in raising awareness.”

“While diabetes may be a part of my story, it doesn’t define who I am,” Mya said, “It’s a challenge I face, but it’s also a part of what makes me strong.”

 

The Kovler Diabetes Center at the University of Chicago Medicine continues to build on more than 100 years of diabetes patient care and research. Our mission is to provide holistic treatment, care, and education that empower our patients to effectively manage their diabetes for a lifetime.

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