Written by Liola and Linxi Mytkolli, General Members
Liola and Linxi pictured with The Honourable Kamal Khera, Minister of Diversity, Inclusion and Persons with Disabilities, at the One Young World Summit 2024 in Montreal.
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Linxi Mytkolli is the Director of Patient Engagement with Diabetes Action Canada, a Novartis Scholar at One Young World, and serves on the Board of Directors for the Albanian Canadian Excellence Society.
Liola Mytkolli is a third-year IB student at Colonel By Secondary School in Ottawa, aspiring to study physics and engineering. She volunteers with the Albanian Youth Group and was part of the digital communications team for One Young World’s 2024 Summit in Montreal.
As siblings, 13 years apart in age, type 1 diabetes (T1D) has shaped our lives in profoundly different ways. For me, living with T1D is a 24/7 responsibility that affects every aspect of my life. For my younger sister, it means offering support and understanding while learning how to advocate for someone she loves. Together, our lived and loved experiences have driven us to raise awareness, educate others, and advocate for change—not just for our family, but for the broader diabetes community.
This World Diabetes Month, we’re reflecting on how type 1 diabetes has influenced not only our personal lives but also our professional goals and shared advocacy. Through our work with the Young Canadians Roundtable of Health (YCRH), we’ve turned our experiences into action, striving to create a more informed, compassionate, and supportive society for everyone affected by diabetes.
Understanding Type 1 Diabetes: A 24/7 Balancing Act
Linxi: Living with T1D means managing a constant balancing act—monitoring blood sugar levels, administering insulin, calculating carbohydrates, and adjusting for physical activity and stress. It’s a 24/7 responsibility that demands vigilance and resilience. Even something as routine as a walk or as spontaneous as dessert at a friend’s house can become complicated. Too much insulin can lead to low blood sugar, causing dizziness and confusion; too little risks high blood sugar, which can lead to long-term complications.
For me, living with T1D is physically and emotionally exhausting, but I’ve learned to rely on a support system that helps me navigate these challenges. Advocacy and awareness are crucial in breaking down misconceptions and fostering understanding. By sharing experiences and educating others, we create a more informed and supportive community—something every person with type 1 diabetes truly needs.
Supporting Type 1 Diabetes: A Sister’s Perspective
Liola: As Linxi’s younger sister, I’ve grown up seeing how type 1 diabetes affects every part of her life. For me, supporting her means being present and adaptable. I’ve learned to recognize the signs of blood sugar changes and be prepared to help during lows or highs. Sometimes, it’s about practical things, like keeping snacks on hand or understanding emergency procedures. Other times, it’s about being a listening ear when she’s feeling overwhelmed or frustrated.
I’ve seen how important empathy and understanding are. Whether it’s friends, classmates, or coworkers, simple actions—like accommodating dietary needs or just being informed—can make such a difference. I’ve realized that true support isn’t about fixing things; it’s about showing up and meeting someone where they are.
Advocacy as a Shared Mission
Linxi: Advocacy plays a central role in my life. For me, it means sharing my journey, raising awareness, and breaking down misconceptions. I’ve used my voice in research co-design through my job, spoken at events about diabetes, and worked with organizations like YCRH to help create positive change.
Liola: For me, advocacy means being an ally. I amplify Linxi’s and the broader diabetes community needs and help educate others about what it’s like to live with T1D. Schools and workplaces often don’t have the knowledge to fully support people with type 1 diabetes, which can lead to stigma or inadequate accommodations. Advocacy from loved ones helps bridge these gaps and fosters inclusivity.
Our work with YCRH has brought us closer together while allowing us to turn our experiences into action. Through volunteering, we’ve contributed to initiatives that raise awareness about diabetes and advocate for better policies.
World Diabetes Month: A Time for Action
World Diabetes Month is a reminder of why advocacy and education are so important. It’s an opportunity for all of us—whether we live with diabetes or love someone who does—to raise awareness and help create a more supportive and understanding community.
This November, we encourage others to learn, support, and advocate. Advocacy isn’t limited to those directly affected by diabetes; anyone can contribute by sharing accurate information, supporting diabetes organizations, or showing empathy.
Join the Movement
The first step in creating a more supportive and inclusive world for people with diabetes is to listen. Take the time to listen to their experiences, needs, and challenges. Ask how you can help, learn what they don’t want or need, and be open to supporting them in the ways that matter most. Empathy begins with listening.
Next, consider getting involved. You can learn more and make a difference by volunteering with organizations like the Young Canadians Roundtable of Health (YCRH), where youth from across Canada collaborate to address pressing health issues, including diabetes. Advocacy starts with education and action.
Finally, if you have diabetes or love someone with diabetes, you can take your involvement further by contributing to diabetes research and program co-design. Diabetes Action Canada offers opportunities to become a patient partner, working alongside researchers to shape the future of diabetes care, policies, and programs. Your lived or loved experience can drive meaningful change.
For more information about becoming a patient partner or joining a youth engagement program, visit https://diabetesaction.ca/signup/ or contact info@diabetesaction.ca . Together, we can build a stronger, more compassionate community for everyone affected by diabetes.