At age 12, Chaya Acevedo’s family couldn’t explain why she was falling asleep in class, visiting the bathroom so often and vomiting every day, or why her weight was dropping. Unsure of what to do, her mom took her to the emergency room. A doctor diagnosed her with gastritis and sent her home.
Even as she kept getting sicker, her family thought she was trying to lose weight. They ordered carb-heavy meals to help her gain weight, unaware she had Type 1 diabetes, an autoimmune disease where the body can’t produce enough insulin. Without insulin, sugar builds up in the bloodstream while the body burns fat for energy. Building up enough acidic waste, or ketones, can be dangerous.
When Acevedo nearly slept through her favorite holiday, the 4th of July, her mother took her back to the hospital. Acevedo was finally diagnosed with juvenile diabetes. Her mom immediately started crying. “I’m like, ‘Mom, am I going to die?’” Acevedo said. “She’s like, ‘No, you’re going to be fine.’”
But she wasn’t fine, and wouldn’t be for years. Fewer than 1% of children in New York City have Type 1 diabetes, making it harder for families to find accurate, accessible information. For Latino youths, who are slightly more likely to be diagnosed with Type 1 than Type 2 between ages 10 and 19, that lack of knowledge can be dangerous. And without support or community, the mental health toll can be just as serious as the physical one.
Now, at age 23, Acevedo is starting to see a different future for other 12-year-olds getting the same diagnosis. She’s noticed more Type 1 diabetes influencers sharing their experiences on social media. Fewer people gape at her continuous glucose monitor (CGM) in public. And last month, the toy company Mattel partnered with the nonprofit Breakthrough T1D, the leading global organization funding type 1 diabetes (T1D) research, to launch the first Barbie with Type 1 diabetes.
The family blame game
At first, Acevedo didn’t think her diagnosis was a big deal. Her grandfather had diabetes and just skipped soda. But her parents’ confusion and panic made it feel more serious. While she was raised vegetarian by health-conscious parents in Jackson Heights, Acevedo still wondered, “did I do this to myself? ’Cause maybe I started eating too much sugar.”
Acevedo’s doctor explained T1D wasn’t caused by diet or lifestyle. But it took time for that message to sink in, for both her and her family. It’s a common reaction, said Anastasia Albanese-O’Neill, vice president of medical affairs at Breakthrough T1D, whose own daughter was diagnosed with the condition 23 years ago. “There was blame,” she said. “You know, ‘was it my fault?’”
Back then, Albanese-O’Neill recalled, everything she heard about T1D was negative. It was a condition you hid. But that’s changing: “There’s even a Barbie doll with type 1 diabetes, something that would have been unthinkable back then,” she said. “When I think about representation, I think: this iconic doll that is wearing these devices. What a great conversation starter.”
From confusion to advocacy
One of the toughest challenges for families is simply knowing how to support their child. When Acevedo was first hospitalized, unsure of what she could safely eat, her dad brought her steamed vegetables while her siblings hit up the family’s favorite pizzeria. She sat alone and cried, thinking, “Am I never going to eat pizza again?”
This gap in understanding can leave children feeling isolated and families grasping for answers. But as awareness grows, kids often learn that they can still enjoy their favorite foods.
“With Type 1, you can eat anything you want, as long as you match the insulin to that food,” said Albanese-O’Neill.
For Acevedo, this learning curve created friction with her family. For instance, at a diner, she asked for a Diet Coke, but her dad said no. She tried to explain that Diet Coke wouldn’t affect her blood sugar, but didn’t feel like she could push back on her father. So she just sat there and cried.
This confusion is common, especially between Type 1 and Type 2 diabetes, and especially among communities that are disproportionately affected by Type 2 diabetes. It’s no surprise that when caregivers of children with T1D are more educated about the condition, their kids have lower blood glucose levels. However, research has shown that Latino families need more culturally tailored education and support to bridge these gaps.
Over time, Acevedo reassured her dad and his side of the family that she could eat most foods with proper management. Now, with the hype around the new Barbie, largely from women content creators with T1D, this message may be reaching more families. One semi-viral TikTok video by @sugarcoatedsisters featured their version of the Barbie character holding an oversized, multicolored lollipop.
From Nick Jonas to Barbie
It took years for Acevedo’s family to truly understand her diagnosis. Beyond the confusion between diabetes types, Acevedo often has to explain that even within the T1D community, no two bodies respond the same. For example, a walk that lowers one person’s blood sugar might do nothing for another. She also faces well-meaning but misguided advice around home remedies, like a friend’s grandmother insisting cinnamon could cure her diabetes.
More people now notice her insulin pump or CGM and ask questions. It’s thanks, she says, to public figures who wear their devices openly. Seeing diabetes gear represented in media, like a girl in a Disney movie casually wearing a CGM, feels powerful even if the character wasn’t identified as Type 1. When Acevedo was first diagnosed, even knowing Nick Jonas had Type 1 and wrote a song about it made her feel less alone.
“And that was just minor representation,” Acevedo said. “So seeing all the more representation now just makes my inner child so happy to feel so seen.”
That also includes the new Barbie, who is equipped with a CGM on her arm, an insulin pump attached to her waist and a phone displaying a CGM app.
She says she wishes a Barbie like this had existed when she was 12, back when she was too embarrassed to wear her CGM in public. “I would have just been like, ‘ok, I’m going to be like Barbie, I’m going to get my insulin pump,’ ” she said. “It would have helped me so much early on.”
Acevedo used to be among many young Latinos who didn’t use insulin pumps, not just because of stigma but also cost and access. Only 39% of Hispanic young adults use insulin pumps, compared to 72% of their white peers, according to a 2020 study.
Now, with both a CGM and an insulin pump, managing her diabetes is much easier. Acevedo used to have to take insulin shots every time she ate. Today, she simply enters the number of carbohydrates into her phone, which automatically tracks her blood sugar levels and eliminates the need for constant finger pricks.
Issues with self-esteem
Acevedo says one of the toughest parts of having T1D is feeling alone. For a long time, she didn’t have a T1D community. Her family didn’t fully understand what she was going through, and going out with friends reminded her of how different her own experience was. She was the only one pushing to calculate carbs and check her blood sugar and insulin while everyone else just ate.
“I wish they understood that it was a constant thing,” Acevedo said. “It’s not just a ‘I take a pill once a day and don’t think about it.’ It’s a full-time job. […] We have, figuratively and literally, a lot of highs and lows that affect us.”
The vigilance was tough to turn off. While walking to work, she would wonder if her blood sugar was crashing. If she didn’t stay on top of it, her energy would tank and affect her hormones, productivity and self-esteem.
As a nurse practitioner and diabetes educator, Albanese-O’Neill of Breakthrough T1D says she’s acutely aware of this burden, especially on teens: “They are trying to do this on their own every day, maybe with some pressure from parents or feeling like they’re not doing a good enough job when they visit the doctor,” she said.
Acevedo’s body image also suffered. Early on, Acevedo learned that skipping insulin could make her lose weight quickly. Chasing a certain body image led to hospital stays, exhaustion and depression as a teen. She later found out how common this is among girls with Type 1: More than half may meet the criteria for an eating disorder.
It’s a risk Albanese-O’Neill sees often. It’s due to “this constant focus on everything you put in your mouth and counting the carbs in it and not being able to maybe eat something you want to eat right away,” she said, adding that this can create an imbalance in someone’s relationship with food.
But teens often don’t talk openly with their caregivers about these struggles, she said, which is where online communities can help.
Your child might find their T1D tribe online
Acevedo says writing about these experiences helped her process them and feel less ashamed. She did so first in a college essay, then in an Instagram post, a photo shoot and finally a campaign at her alma mater, Queens College.
The photo shoot was organized by a fellow Type 1 advocate she met through a support app. The shoot featured the words “stigmatized” and “mindful” across her body, and it struck a chord. Acevedo recalls her friends told her: “Wow, I didn’t realize it hit you this hard, because you wear it so well.’”
Sharing publicly gave her confidence and helped others in her life understand. “My family was like, ‘wow, I didn’t know […] that you felt stigmatized,’ ” she said.
Using social media to cope with T1D
Parents have sounded alarms about the link between social media use among youths and mental health concerns. However, for Acevedo, social media has lightened the load and her loneliness.
“Finding other diabetics on Instagram that post memes and we just laugh about the things that we deal with — that has helped a lot,” she said. These include forgetting to change their insulin, crashing from high blood sugar, or waking up “in the middle of the night and I already had brushed my teeth but I had to down a whole bunch of Skittles to raise my blood sugar,” she said.
That levity helped her reframe her experience, she says, and see she isn’t the only one carrying this invisible weight. Acevedo now works as a paraprofessional, helping another group often misunderstood, including by family: students with disabilities. “They’re stigmatized too, and […] shoved away from the world sometimes,” Acevedo said. It pushes her to pursue speech pathology as a career, to help more kids learn to express themselves and advocate for their needs.
She urges youths with T1D to ask real questions: “For other Type Ones […], talk about it,” she said. “Find people that’ll ask you questions. It’ll help you go through the journey.”
T1D resources for families
To help the whole family throughout the journey, Breakthrough T1D offers tons of resources. Here are some:
- The “Bag of Hope” for kids, which includes a teddy bear with diabetes named Rufus, and specific packs for teens and adults;
- Mental health guides on diabetes burnout, anxiety, body image issues and eating disorders;
- Insurance kits and school guides, with tips on how to talk to teachers and school nurses about your child’s needs;
- Guidance on what to do in an emergency and on holidays;
- Educational videos you can share with extended family before the next reunion;
- Annual walks that bring family together, raise funds and show kids they’re not alone;
- More community at the Greater NY metro chapter of Breakthrough T1D.
Check out more resources from Breakthrough T1D.
