Strength, struggle, and resilience: my mom’s journey with T1D

By Ellie Peterson

Though I do not live with type 1 diabetes (T1D) myself, I have witnessed firsthand the strength of those who do. My mom was diagnosed with T1D as a teenager, so T1D, and later the organization Breakthrough T1D, helped shape not only my relationship with and perception of my mother but also my adolescence. By witnessing how my mom has lived and thrived with T1D, I have developed a deep respect for her and a strong attachment to Breakthrough T1D’s mission.

Something specific that sticks out to me when I think back on my childhood in relation to my mom’s T1D is how safe she made it feel. I don’t have any memory of being scared for her, though I know she experienced health scares throughout my childhood. She would always reassure me that the finger pricks didn’t hurt, and I remember having a strange affinity for the glucose tablets that I would take alongside her in the car when she was low. I remember her explaining T1D to me as a kid in a way that was simple and age-appropriate, leading me to view it as merely a part of her life. I knew T1D as something that was a part of who she was but not something that limited or defined her. 

Though my mom is extremely independent, I think her T1D invited a certain level of vulnerability that allowed us to become closer. I learned empathy and understanding and the ability to see and respect resilience, all of which I value deeply and will carry with me throughout my life. 

Even in moments of struggle, my mom shielded my siblings and me from worrying excessively. She was able to admirably balance her health with raising three kids in a way that equally educated us and aimed to protect us from concern. She juggled medical implications, dietary considerations, and blood-sugar scares with grace. As an adult who now understands more clearly the complexities and daily struggles that come with having T1D, my respect and admiration for my mother have grown.

I also want to acknowledge that my mom has had the great privilege of an amazing and supportive network through Breakthrough T1D that provided not only community but also technology that has directly improved her quality of life. My mom was also fortunate to have extremely supportive and dedicated parents, who, shortly after my mom’s diagnosis, co-founded the Mississippi chapter and have been dedicated advocates for Breakthrough T1D’s mission since. 

A heartwarming memory that I have to mention when discussing familial support is one of my dad. In my senior year of high school, my dad ran 268 miles between September and October to raise money for Breakthrough T1D before the annual Walk. He had me make custom signs to thank each donor (pictured at left). His love and support of both my mom and Breakthrough T1D are so inspiring to me and speak not only to his dedication and respect for my mom but also to the community Breakthrough T1D provides. 

As I enter into adulthood and begin my internship at Breakthrough T1D this summer, I carry with me the respect and admiration I have for my mom and the organization Breakthrough T1D itself. Her journey with T1D, her strength, and her outlook on life have shaped me into the person I am today.

Strength, struggle, and resilience: my mom’s journey with T1D

The importance of a well-coordinated support system

Adalyn, however, is determined to approach the new school year with confidence. “I am a little nervous, but not much. I know my nurse is there to help me,” she said recently. Her words are a reminder of the importance of having a well-coordinated support system in place. Making sure the school nurse knows Adalyn’s care plan and is prepared to respond to any situation is a critical step in ensuring her safety.

Additionally, we’ve worked closely with her teachers to make sure they’re aware of her condition and know how to take the right steps now to ensure her success later. This includes understanding the signs of high or low blood sugar and knowing when to allow her a break or snack. If you are looking for permission to be “that parent,” here you go. Be that parent. As a physician, occasional coach, and father, I have never once thought, “Oh, I really regret being too prepared for this.” I am sure I may be a headache, but it is this collaboration between parents, healthcare professionals, and educators that forms the foundation of a safe and supportive learning environment.

Creating an environment for thriving

Let’s not forget that continuous glucose monitors and insulin pumps have been life-changing. I’m thankful for the incredible advancements in medical technology that allow Adalyn to lead a relatively normal life. These tools enable her to do things she loves, like playing softball and other sports. But these tools are only part of the equation. The real challenge lies in creating an environment where she can thrive academically and socially, without constant worry.

This is where awareness and education become crucial. Schools must be equipped with the knowledge to support students with T1D, with the necessary medical supplies, and foster an environment where every child feels safe and understood. I have it on good authority teachers aren’t trained on T1D and all that comes along with it. That is where we—the prepared parents—come in. Teachers, staff, and even fellow students need to understand what T1D is and how they can help. A simple understanding can go a long way in making sure children like Adalyn feel safe and supported.

Setting our schools—and kids—up for success

If there’s one thing I’ve learned, it’s that managing type 1 diabetes is a team effort. It requires not just the dedication of parents and medical professionals, but also the understanding and cooperation of educators and community members.

So, as we prepare for another school year, I want to make a call to action. Let’s set our schools—and our kids—up for success. Let’s ensure that our schools are prepared to support children with T1D and other chronic conditions. This means advocating for better training for school staff, ensuring that schools have the necessary medical supplies, and fostering an environment where every child feels safe and understood.

As we send our children back to school, let’s also commit to sending them into environments where their health needs are met with compassion and competence. Let’s work together to ensure that every child, regardless of their medical condition, has the opportunity to learn and grow in a safe and supportive setting. This is not just about managing a disease; it’s about empowering our children to live their fullest lives. And until there are cures, we parents and caregivers must be the advocates, the educators, and the support system they need.

Together, we can make a difference

Breakthrough T1D offers a school guide to help parents advocate for their children’s needs. They also have resources to help educators understand the unique needs of students with T1D. Consult their T1D Resource Library for the school guide and other helpful life with T1D guides.

The road ahead is challenging, but we are not alone. Together, we can make a difference. Just like Adalyn confidently steps up to every challenge, we, too, must step up, ensuring that every child with T1D has the chance to thrive, both in school and in life.

2024-06-24

Breakthrough T1D Spearheads the Formation of Monitoring Guidelines

You have heard Breakthrough T1D say it before: Build a global universal type 1 diabetes (T1D) early detection program. This will reduce diabetes ketoacidosis (DKA)—a life-threatening complication—at diagnosis and identify autoantibody-positive individuals to take part in preventive treatment or clinical trials.

Having 2 or more persistent T1D autoantibodies—antibodies that are directed toward your own body—means you have an almost 100 percent chance of developing T1D in your lifetime.

But there have been no monitoring guidelines for individuals who tested positive for T1D autoantibodies through early detection. Until now.

Consensus Guidance

Breakthrough T1D spearheaded an effort to develop the first internationally agreed-upon guidance for anyone who tests positive for T1D autoantibodies, co-published today in the journals Diabetes Care and Diabetologia.

These provide guidelines for monitoring children, adolescents, and adults who test positive for T1D autoantibodies, along with recommended monitoring frequencies and actions for healthcare professionals when the risk of progression toward symptomatic T1D is high. 

The guidance also includes recommendations for educational and psychosocial support for positive T1D antibody individuals, including their families and caregivers, and may also lead to primary care doctors screening more frequently since there is actionable monitoring guidance available to them.

For the first time, individuals, families, and healthcare professionals have concrete next steps to monitor early stage T1D progression and catch symptoms early to prevent DKA.

This guidance was developed in conjunction with over 60 international experts, representing 10 countries and endorsed by 11 national and international societies.

2024-06-24

ADA Takeaways: Day 2

The American Diabetes Association’s 84th Scientific Sessions is here! Scientists will present the latest type 1 diabetes (T1D) research, from early detection to glucose control to complications, all with the goal of improving lives for the T1D community.

In November 2022, the FDA approved Tzield™ (teplizumab-mzwv) for use in delaying the onset of clinical T1D. With the availability of a treatment option for people with Stage 2 T1D, the field has changed its outlook on delay and prevention and navigating pediatric T1D, especially in the early stages. Annette-Gabriele Ziegler, M.D., presented on several screening programs in Europe, including Fr1da, which has screened 200,000+ pediatric participants and found that it significantly reduces DKA onset at clinical diagnosis, and GPPAD, which identifies infants with an elevated genetic risk of developing T1D and enrolls them in primary prevention clinical trials. Andrea Steck, M.D., highlighted the value of CGM-based metrics in evaluating T1D risk and R. Brett McQueen, Ph.D., discussed the economics of early detection.

At-risk, or Stage 2 T1D, means that a person exhibited 2+ T1D-related autoantibodies—antibodies against one’s own self—and their blood glucose is starting to be abnormal, but they are not yet insulin dependent. When someone becomes insulin-dependent, they are in stage 3 T1D.

We got updates on several automated insulin delivery (AID), or artificial pancreas, systems, including the:
- Medtronic MiniMed 780G, especially the importance of initiating it as soon as possible following diagnosis (which is now recommended in the ADA Standards of Care for both children and adults), citing the CLVer trial, which found clinically meaningful and sustained improvements in blood sugar management following early AID initiation.
- Medtronic MiniMed 780G in high-risk youth with T1D, with 80 participants aged 7-25 years, who demonstrated an average HbA1c reduction of 2.5% (from an average baseline HbA1c of 10.5% to 8%), improvement in time-in-range, and a reduction in low blood sugar events.
- Tandem Mobi among early pediatric and adult adopters.
- Sequel Med Tech’s twist AID system, which was FDA-cleared for people with T1D aged 2+ in March 2024. The system uses the DEKA Loop algorithm, which is based on the FDA cleared Tidepool Loop (iAGC) and is intended for use with compatible interoperable continuous glucose monitors (iCGMs). Sequel is Tidepool’s first publicly announced insulin delivery device partner with an FDA-cleared system that will integrate Tidepool Loop.

In therapy, the full INHALE-3 results demonstrated the non-inferiority of inhaled insulin (Afrezza) used with insulin degludec compared to usual care. Baseline HbA1c was 7.6% across groups, and, on average, HbA1c in both groups remained stable from baseline to 17 weeks. Overall, 30% of the inhaled insulin group reached <7.0% A1c at 17 weeks compared to only 17% of the usual care group.