The Impact of Sylvie Maalouf’s Missed Diagnosis on Global Diabetes Care

Her journey to a type 1 diabetes (T1D) diagnosis was far from typical—months of missed signs and uncertainty shaped her understanding of how vital early detection and awareness could be. She believes that education and robust screening programs could have identified her condition sooner, giving her the knowledge and tools to manage her health effectively from the start. 

Today, Sylvie leads initiatives that educate communities, influence global policy, and empower people living with diabetes, proving that one person’s story can spark meaningful change in global diabetes care.

A Unique Path to Diagnosis

Sylvie’s path to a diabetes diagnosis was complicated by how medical professionals addressed her symptoms. She recalled that doctors often focused on individual symptoms rather than the whole picture, which meant that the pattern of her disease went unnoticed. 

She reflected that if there had been systematic screening programs, or perhaps just awareness, her health condition might have been identified earlier, allowing her to understand and manage diabetes proactively.

Even with access to education, healthcare facilities, and a healthy lifestyle, Sylvie did not recognize the signs of type 1 diabetes. This realization became a driving force for her advocacy. 

Sylvie founded Dialeb, a Lebanon-based nonprofit dedicated to education and awareness about diabetes and advocacy and support for people living with diabetes, working alongside her mother, Dr. Jackie Kassouf Maalouf, who is now serving as vice president of the International Diabetes Federation for a second term, and appointed member of the board of NCD Alliance. 

Today, their organization is influential across Lebanon, and its activities reach beyond national borders, extending to multiple forums worldwide.

If someone like Sylvie, with all the resources and support, could miss the signs, many others without those advantages were at even greater risk. “Screening and early detection are not just about testing,” she said. 

“It’s about creating awareness, giving people the tools to understand their bodies, and equipping healthcare providers to see the bigger picture.”

Education, Storytelling, and the Power of Awareness

Education and awareness were central to Sylvie’s approach. She believes that knowledge empowers patients, healthcare providers, and policymakers alike. 

Through Dialeb and her international work, she demonstrates that storytelling is one of the most powerful tools for advocacy. Sylvie explained that stories define the core element of humanity. 

“When people hear someone’s journey, they connect with them in a way that numbers or statistics could not achieve,” Sylvie said. Her advocacy emphasizes that raising awareness is essential to help individuals recognize diabetes sooner. 

She works tirelessly to ensure that education reaches not only patients but also healthcare professionals and policymakers, creating a holistic understanding of the realities of living with diabetes.

Sylvie has recently joined the Strategic Committee of Voices in Action: People Living with Diabetes in Global Health (VIA), a movement founded by James Elliott and co-founded by Lucía Feito Allonca, both global health professionals. 

The movement aims to place lived experience and meaningful engagement at the center of the international policy dialogue. 

In her new role, Sylvie leads and helps shape the movement’s agenda, ensuring that the perspectives of people living with diabetes guide and inform international policies and decision-making. 

Her involvement underscores the crucial role of real-life experience in shaping effective diabetes prevention, management, and advocacy globally.

Advocating for Access to Care

Sylvie is a passionate advocate for equitable access to healthcare. She highlighted that insulin was a life-saving necessity, not a luxury. She often speaks about the unacceptable reality that many people around the world are forced to ration insulin, skip doses, or choose between feeding their families and purchasing medication.

Her advocacy also addresses the “blame culture” frequently associated with chronic diseases. She pointed out that lifestyle was heavily influenced by environment, education, and access to resources. 

“Without safe spaces to exercise, affordable nutritious food, and adequate health education, individuals cannot make the choices that many public health campaigns assume they can”. 

Sylvie stressed that governments have a critical role in shaping policies that both prevent and manage chronic diseases while ensuring equitable access to care.

Sylvie engages with governments, international organizations, and multilateral agencies to advocate for changes that address social determinants of health. She emphasized the importance of involving people with lived experience in policy design, ensuring that programs were practical, effective, and responsive to community needs.

Leading on the Global Stage

Sylvie’s influence extends far beyond her local initiatives. As a recognized global leader in diabetes advocacy, she leverages her personal experience to impact international health policy and practice. 

Her work spans multiple sectors, including healthcare, education, sustainability, and family policy, primarily through her role at the Qatar Foundation.

Sylvie’s approach emphasizes culturally relevant and context-specific strategies that simplify complex information for diverse audiences. 

By translating technical knowledge into accessible guidance, she ensures that her advocacy has real-world impact. She explained that policy could only be effective if it was understandable and actionable for the people it was meant to serve.

Sylvie mentors new advocates and amplifies the voices of people living with diabetes worldwide. She leads discussions on global platforms, advocating for programs that increase access to care, improve awareness, and strengthen community support networks. 

Connecting individuals across countries allows her to share knowledge, learn from different contexts, and promote a global approach to diabetes care.

Finding Motivation Amid Challenges

Living with type 1 diabetes is demanding. Sylvie described it as a condition with “no days off,” where managing highs and lows requires constant attention. As a full-time working mother of two teenage sons, a global advocate and an NGO leader, Sylvie tries to balance the daily struggles of living with diabetes while the full-time demands of a busy life. 

She does not shy away from highlighting that some days are harder and sometimes the lows force her to take time to refocus on her health. However, her global advocacy provides purpose, connection, and resilience. She finds motivation in seeing the impact of her work, connecting with peers worldwide, and helping others navigate their own journeys. 

She said that the challenges could be managed when people remembered the purpose of what they were doing. “Living with an NCD like diabetes can be isolating and lonely due to the invisible nature of the condition”, she said. 

Global advocacy and connecting with others who’ve had lived experiences are powerful reminders that we are not alone and that all stories can inspire change. 

One of the most visible moments of joy during the interview came when Sylvie spoke about her sons, Rafael, 14, and Gabriel, 13. Her face lit up as she described them, reflecting how central her family is to her sense of purpose and happiness. 

She considers motherhood an essential and inspiring part of her story—this is important to address, especially in regions where misconceptions about women with diabetes and motherhood persist. 

For Sylvie, being a mother is not only a source of deep fulfillment but also living proof that women with chronic conditions can lead full, nurturing, and impactful lives. 

Through VIA, Dialeb, and her leadership at the Qatar Foundation, Sylvie demonstrates that lived experience is a source of expertise. By centering the voices of people directly affected, she ensures that programs and policies are both practical and impactful.

Inspiring Change 

Sylvie Maalouf’s journey is a testament to the transformative power of courage and heart. She has taken life’s most difficult moments and turned them into a force that uplifts, empowers, and lights the way for others. 

Through her words, actions, and unwavering hope, she shows that one person’s story can awaken resilience, ignite change, and touch lives across the world.

Sylvie reminds us that even in the darkest moments, we each carry the power to create and mobilize change, to build connection, and to inspire hope that stretches far beyond ourselves—leaving a legacy that grows with every life it touches.