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Looking back on my family’s type 1 diabetes journey, it seems the condition has been a quiet but constant presence in our lives for years. My husband was diagnosed fifteen years ago at the age of 37. His sister and niece were both diagnosed young, and today, both of my adult sons have tested positive for diabetes autoantibodies. My daughter was diagnosed seven and a half years ago. In many ways, diabetes has shaped who we are as a family, but it has also driven me to become an advocate, both for my loved ones and for others living with the condition.
Over the years, I have seen the power of awareness, education, and early intervention, not only in preventing medical emergencies like diabetic ketoacidosis (DKA), but in ensuring that people living with diabetes are treated fairly in every setting, from clinics to classrooms.
What I have learned is simple: when we work together—families, schools, healthcare professionals, policymakers, and advocates—we can build a world where no one has to face diabetes alone, and where care, understanding and opportunity are universal.
What I have learned is simple: when we work together—families, schools, healthcare professionals, policymakers, and advocates—we can build a world where no one has to face diabetes alone
For families like mine, where diabetes is common, screening is both lifesaving and empowering. I first learned about early screening for type 1 diabetes in 2018, when my daughter’s endocrinologist mentioned TrialNet. This program offered free test kits for families with relatives living with the condition. My two sons were tested and received negative results. Two years later, in 2020, I requested retesting through our primary care doctor—and that time, one son tested positive for a single autoantibody.
That result changed everything for me. It made me realize how important screening is, not just for those of us who already know diabetes, but for every family. Despite three relatives with type 1 diabetes, my daughter’s glucose was never tested by her doctors, even when she showed clear symptoms. We ended up diagnosing her ourselves using my husband’s glucometer. The experience was shocking, but also eye-opening: if a family like ours—deeply familiar with diabetes—could miss the signs, how many others were being missed entirely?
Identifying autoantibodies before diagnosis can help slow progression, delay onset and reduce the risk of severe complications. It gives families time to prepare, to understand what is coming and to connect with healthcare professionals and community support.
But access to screening is far from equal. In our case, it was free through research programmes or covered by insurance. For many families, that is not the reality.
I urge policymakers to prioritise investment in type 1 diabetes screening and early detection initiatives as integral components of universal healthcare systems. While some may argue that resource constraints and competing public health priorities complicate large-scale implementation, the long-term benefits of integrating routine screening are substantial.
Within the next five to ten years, it should be standard practice for primary care providers to educate families and facilitate access to straightforward blood testing for autoantibodies.
I urge policymakers to prioritise investment in type 1 diabetes screening and early detection initiatives as integral components of universal healthcare systems.
For parents of children living with diabetes, schools are often the next battleground. I say this as someone who has fought hard for proper support for my daughter. When she was diagnosed, I quickly learned that not all schools are equipped, or even willing, to meet the needs of students with diabetes.
After years of persistence, when we finally achieved the right accommodation, training and understanding from school staff, I felt a huge sense of relief. But that relief quickly turned to discomfort when I realized that other children at the same school were still being denied the same support.
It felt like privilege-based diabetes care. My daughter received what she needed, but only because I had the time and resources to advocate for her. What about parents who could not? What about the families juggling multiple jobs, language barriers, their own health conditions, or simply the exhaustion that comes with a new diagnosis? It was not right. And that’s when I realized: advocacy does not end when your own child is safe. That is where it begins for everyone else.
So, I continue to speak out. Parents who have been through the process know what works and where the system falls short. We carry hard-earned knowledge that can prevent other families from enduring the same stress, uncertainty, and fear. We can mentor, share resources, and guide schools to develop inclusive, consistent policies.
But parents shouldn’t have to do this alone. Teachers, nurses, and other school staff are powerful advocates too. Many see the daily challenges that students face but feel unprepared or unsupported to act. That is where programmes like Kids and Diabetes in Schools (KiDS) come in. They train school personnel to understand diabetes, respond to emergencies, and create an environment where students living with diabetes can thrive.
When school staff are informed and educated, they become allies. They can speak up for children when parents cannot. They can normalize inclusion and ensure that diabetes doesn’t become a source of stigma or exclusion. I have seen the difference it makes when a teacher understands how to spot a low or when a school nurse knows how to administer glucagon confidently. Those moments can literally save lives.
When school staff are informed and educated, they become allies. They can speak up for children when parents cannot
Advocacy is a collective responsibility
In 2024, the International Diabetes Federation (IDF) carried out a global survey to assess diabetes-related educational initiatives and policies in schools. The findings revealed significant gaps in diabetes education, care and prevention in school settings. Only 15% of respondents reported a government initiative or policy in their country mandating diabetes education in school curricula, while nearly half (47%) said their country lacked any programme to train school staff on diabetes.
Not every parent can become an advocate. Life with diabetes can be overwhelming. Between managing blood glucose, navigating health systems, and trying to maintain a sense of normality, there’s only so much energy to go around. That’s why systemic change is essential. Schools, healthcare systems, and governments must share the responsibility for creating safe, equitable environments for people living with diabetes.
Advocacy should not depend on privilege. The goal is a future where no child’s care depends on whether their parent has time to send emails, attend meetings, or quote policy documents. A future where support is automatic, not optional. Where teachers receive the same level of diabetes education as they do for other common health conditions. And where national health systems integrate diabetes screening and management seamlessly into everyday care.
This is especially critical in underprivileged areas and humanitarian settings. The challenges of diabetes care do not stop at borders. They are global. In some countries, schools lack basic resources or training. In others, insulin access remains unreliable. These are not separate issues. They are part of the same fight for equity and dignity.
Advocacy should not depend on privilege. The goal is a future where no child’s care depends on whether their parent has time to send emails, attend meetings, or quote policy documents
Whenever I speak about these topics, whether it is screening, school care or policy, I always come back to one truth: lived experience is powerful. Parents, caregivers, and people living with diabetes hold insights that professionals and policymakers simply cannot access from data alone. We see where systems fail in real time, and we understand what meaningful change looks like.
That is why the Blue Circle Voices network matters so much. It connects individual stories with broader movements, where personal struggles lead to collective action.
In my own journey, I have seen the best of what happens when advocacy meets action. I have watched families avoid DKA after learning about early screening. I have seen children blossom in schools where teachers understand their needs. I have witnessed healthcare providers take parent feedback and turn it into better care protocols. Every one of these moments reminds me why this work matters.
We see where systems fail in real time, and we understand what meaningful change looks like.
As we move forward, I want to see screening and school support embedded in national healthcare strategies, not treated as optional extras. I want every parent to have access to clear information about early testing. I want every teacher to feel confident supporting a student with diabetes. And I want every policymaker to understand that investing in these systems is smart, compassionate public policy that saves lives and reduces long-term healthcare costs.
Most of all, I want people living with diabetes to feel seen and supported, no matter where they live. Whether it’s a parent in a rural community learning to check blood glucose for the first time, or a teenager in an urban school needing reassurance that they’re not alone, every person deserves the same foundation of care, respect, and opportunity.
We have the knowledge. We have the tools. What we need now is the will to make change happen everywhere.
If there is one thing I have learned through years of living alongside diabetes, it is that progress does not come from one person or one breakthrough comes from all of us working together. From families sharing their stories. From teachers choosing compassion. From doctors asking better questions. From policymakers making the bold decision to prioritise prevention and education.
Advocacy is not just about raising our voices. It is about lifting each other until the system itself starts to reflect the values we hold dear, understanding and hope.
This is the world I want for my children, and for everyone living with diabetes. And I will keep advocating until we get there.
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