“Community Is Crucial”
Diabetes educator and advocate Edith Mukantwari shares lessons from her lived experience with type 1 diabetes
In April 2024, Edith Mukantwari (left) presented her lived experiences with type 1 diabetes at the First International Conference on PEN-Plus in Africa, which the World Health Organization hosted in Dar es Salaam, Tanzania. Mukantwari told her story during a panel discussion with several of her fellow Voices for PEN-Plus advocates, including Arafa Said (center), an advocate living with sickle cell disease, and Moses Echodu (right), a survivor of childhood cancer.
Edith Mukantwari, a person living with type 1 diabetes in Kampala, Uganda, is also a public health activist, nutritionist, and diabetes educator. She serves as president of the Africa Diabetes Alliance, a Uganda-based organization that promotes diabetes education and bridges the information gap for people living with diabetes. She is also a member of the NCDI Poverty Network’s Voices for PEN-Plus, a team of people living with severe, chronic noncommunicable diseases (NCDs) who seek to build solidarity across diseases and advocate for the implementation of the PEN-Plus healthcare delivery model across sub-Saharan Africa and South Asia.
In recognition of World Diabetes Day on November 14, Mukantwari shared her personal story, the lessons she’s learned, and the importance of a supportive community.
Can you tell us about yourself and your personal experience with type 1 diabetes?
Before I was diagnosed with type 1 diabetes at 16, nobody in my family or community had ever heard of it, much less knew it could affect children and adolescents. While awareness of type 1 diabetes is increasing, the disease is still not well understood.
I have lived with type 1 diabetes for 19 years, and for most of that time, I didn’t feel in control of my own life. I made every decision based on how my blood sugar levels behaved and how those swings affected my health, strength, emotions, and both physical and mental performance.
In 2017, though, I decided to stand up for myself and fight for my health. I started by reading and learning more about type 1 diabetes and effective management strategies. I began testing out the theories I was learning, and my health improved significantly. I then started to educate others, positively impacting our community through my work with the Africa Diabetes Alliance, an organization I co-founded in 2018.
Unfortunately, in 2019, my health took a turn for the worse, leading to a celiac disease diagnosis in July 2020. I learned then that celiac disease had predisposed me to severe hypoglycemia for years. Recovering from this has taken time, but by the grace of God and with the support of health professionals, family members, and friends, my health is improving again.
How did you get involved in advocacy work?
I began my advocacy journey in 2018, volunteering with the Uganda Diabetes Association, the Uganda NCD Alliance, and Changing Diabetes in Children. My first advocacy efforts included presenting research at the annual scientific conference and participating in patient consultations with the Uganda NCD Alliance. Since then, I have been honored to represent people living with type 1 diabetes at the global level, through organizations such as the World Health Organization, the NCD Alliance, the International Diabetes Federation, the International Society for Pediatric and Adolescent Diabetes, #dedoc∘⃘ Voices, the Access to Medicine Foundation, and the NCDI Poverty Network.
Advocacy is a necessity for us all—and it has become a way of life for me.
Living with type 1 diabetes often means juggling not only the physical aspects of the condition but also the mental and emotional challenges it brings. How do you navigate those emotional ups and downs, while still managing your condition day to day?
I am a firm believer that community is crucial to thriving with any chronic illness. Having lived through many difficult periods of illness, I’m convinced that I only made it through thanks to countless friends and family members, both at home and abroad, who stood by me. They have been a constant source of encouragement, often providing an escape from my pain when I needed one. By escape, I simply mean praying for and with me, sending me encouraging scriptures and sermons, teaching me new skills, feeding me, helping me with cleaning, or offering financial support.
I am so thankful for the generosity and love that others have poured into me, which has empowered me to give back by supporting others in turn.
As a diabetes educator, how do you approach teaching people about the importance of mental and emotional health?
Educating people about this takes time, and change can be slow at first. But as awareness of mental health grows, we are all the better for it. When teaching others about mental and emotional well-being, I am very intentional in reminding them that having a noncommunicable disease is not our fault and that we are worthy of life and good health. This is important because misinformation often causes blame. I understand now that self-blame often hindered my own ability to acknowledge my challenges and seek the help I needed.
I have since learned to ask for help when I need it, rather than assuming those around me will magically know when I need help and provide that support. I also recognize that, to achieve a better outcome, when I ask for help, I must be willing to act on the help given. This is critical to empowering myself to take action. When we show gratitude for the help we receive by paying it forward and supporting others, we build a strong community of skilled, responsive, trustworthy, and supportive people.
Community is everything. It can determine our collective strength or weakness, and we all play a part in building it. A community-oriented mindset can support mental and emotional health by lifting one another’s burdens with ease. This is rooted in the Ubuntu tenet “I am because we are,” which upholds the belief that through community cohesion and unity, we are all made stronger.
What are some of the unique challenges and opportunities that people living with type 1 diabetes face in Uganda, particularly in terms of access to treatment, education, and support?
Young people living with diabetes or other severe NCDs face many challenges that greatly undermine their health. One challenge close to my heart is the lack of equitable access to information, resources, and healthcare services, particularly in rural areas. Type 1 diabetes is everywhere, and access to information, services, and necessary resources must similarly be universal.
Unique opportunities include our ability to build the capacity of people living with type 1 diabetes and other severe NCDs through education, training, and increased resources. In the fight against NCDs, patients must be cornerstone partners in the delivery of care, so the benefits of strengthened health systems also empower families and communities, enabling improved outcomes and support across the board.
Another opportunity worth noting is the role of educators in advocating for young people living with type 1 diabetes. Many schools, universities, technical institutions, and workplaces educate, employ, or train young people living with NCDs. These institutions can be greatly influential in creating more inclusive policies and accommodations for young people living with type 1 diabetes or other severe NCDs.
What inspires you to continue your advocacy work?
What inspires me to keep advocating is the desire to improve conditions for future generations, making their experiences better, easier, and more hopeful. Those of us in the type 1 diabetes community want to actively and collectively build a stronger foundation of support for patients and families, to level the playing field and create a lifetime of equitable opportunities and productivity for those with lived experience. Currently, the conditions are not ideal.
What changes do you hope to see in the healthcare landscape for people living with type 1 diabetes in Uganda?
Our healthcare landscape needs a major shift toward shared decision-making across providers and people with lived experience. This partnership would help patients understand the reasons behind different care options and feel empowered to make informed decisions that lead to a more effective management of their condition and a better use of health resources. This approach is known as value-based healthcare.
PEN-Plus, which is still a relatively new healthcare delivery model, invests in health-system strengthening, which Uganda and many other lower- and middle-income countries need. Efforts focused on value-based healthcare and continuous quality improvement are also critical to enhancing the efficiency and sustainability of these systems.
I would also love to see more programs that integrate digital tools into both clinical and community work, as these innovations can be invaluable for record-keeping, monitoring and evaluation, and timely decision-making.
How is the implementation of PEN-Plus improving access to health services in rural areas and affecting the lives of people with type 1 diabetes in Uganda?
People in rural areas often struggle to reach urban areas in a timely manner to ensure continuous care of severe childhood NCDs. Bringing these services closer through PEN-Plus has allowed for timely diagnosis and treatment, in addition to raising awareness and developing support systems at the community level. Although the work is still evolving, the prospects are promising.
PEN-Plus has also been instrumental in helping patients access food, ensuring they can inject insulin without the added worry of food insecurity. When they cannot eat, patients often skip injections, which is detrimental because the body always requires insulin. Fortunately, I have witnessed healthcare teams being attentive to patients’ social circumstances in recognition of the social determinants of health.
As a member of Voices for PEN-Plus, I have learned a great deal about grassroots advocacy and organizing through monthly training sessions from partners such as the American Heart Association and Organizers for Health Justice. I am excited to continue applying these skills to empower passionate community advocates, grow our support networks, and deliver impactful advocacy campaigns.
In November 2023, Edith Mukantwari joined two other Voices for PEN-Plus advocates from Uganda—Moses Echodu (left) and Emmanuel Kisembo—in the commissioning ceremony of the PEN-Plus clinic at Atutur General Hospital in eastern Uganda.
During a panel discussion at the First International Conference on PEN-Plus in Africa, Edith Mukantwari (left) described her early challenges of living with type 1 diabetes in a community with little awareness of the condition. At right is Arafa Said, a Voices for PEN-Plus advocate from Dar es Salaam.