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The Warrior's Path: Moses Egesa's T1D Journey

Moses Egesa hails from the Bujagali village in Jinja city, Uganda. Diagnosed with Type 1 diabetes at the age of 15, Moses faced an unexpected and challenging journey. Living in a rural area of a lower-income country, the diagnosis brought not only significant lifestyle changes but also substantial medical costs and limited accessibility hurdles.


However, through encountering the Sonia Nabeta Foundation, Moses Egesa not only found support but became empowered with a new purpose. As a 'T1D Warrior,' he is dedicated to improving the situation for others. Moses now serves SNF as a diabetes camp counsellor, the warrior coordinator at the diabetes clinic in Jinja, and assistant project manager for Project Boda Boda - all of which we will explore with Moses' story in this #DiAview.


"It was 2013 when I was diagnosed with Type 1 Diabetes (T1D), marking the beginning of my journey as a warrior. At that time, I knew nothing about T1D. I vividly remember doctors restricting my diet, even though the restricted foods were the only ones available at home. I also recall the struggle of injecting myself, which led me to ask doctors for alternative methods of managing T1D other than injections.


In the early years following my diagnosis, I visited various local herbalists, who suggested numerous herbal remedies to try; dangerously hoping in vain to cure my T1D and return to my previous life.


My journey toward accepting life with T1D truly began when I joined the Sonia Nabeta Foundation (SNF) clinic. There, I met peers and young children living with the same condition. Through the clinic, I had the opportunity to gain proper knowledge about T1D and its management. This support and education marked the beginning of my adaptation to life with diabetes."


How did diagnosis personally impact your emotions, Moses?


"I remember dreaming of becoming a medical doctor, but due to the poor management of my condition, especially in the early years following my diagnosis, I was unable to achieve the academic points necessary to pursue that path. Frequent illness and missed school days significantly impacted my education.


I was often sad and lonely.


Additionally, the people around me, particularly my relatives, were often afraid to stay with me because of my Type 1 Diabetes. This fear and misunderstanding made it difficult for me to travel and engage in normal activities."


And, in being still a teenager at that time, was it your family who were supporting the costs of your diabetes supplies?


"In Uganda, accessing essential diabetes supplies is very expensive. Before receiving support from the Sonia Nabeta Foundation (SNF), my family faced a significant financial burden in providing these supplies for me. I recall that my parents could only afford to buy two insulin vials per month, which was insufficient for my prescribed dosage. As a result, I had to reduce/ration my daily insulin dosage.


Test strips were also a challenge due to their high cost. When they were unavailable, I had to pay 5000 Ugandan shillings per test to check my blood sugar levels at least twice a week. Hospital admissions further strained our finances, as my parents also had to cover tuition fees for my siblings. Despite these hardships, my parents always did their best to support me in my journey with Type 1 Diabetes, for which I am deeply grateful."


How do you collect your diabetes essentials?


"I receive my diabetes essentials on a monthly basis and travel by boda boda (motorcycle taxi) to the clinic on my scheduled appointment dates. If I am at school during exam periods and unable to visit the clinic, the doctor arranges for my diabetes essentials to be delivered through the Project Boda Boda initiative. This ensures that I never miss an injection, whether I am on campus or at home."


And without the support of the Sonia Nabeta Foundation...


"Without the support of the Sonia Nabeta Foundation (SNF), access to essential medical supplies would drop to about 40% for our warrior population. In rural Uganda, many warriors live over three hours away from their clinics, making it extremely difficult to obtain necessary supplies. Additionally, the HbA1c test would be inaccessible due to its high cost.

SNF has also transformed our understanding of T1D through camps, warrior workshops, and home visits. Many of us once lived on restrictive diets without realizing that portion control is what truly matters. In the past, we often managed our T1D in isolation, administering injections in secret and fearing others' perceptions. However, over time, through interactions with fellow warriors and shared experiences, we have gradually developed a sense of pride and empowerment.


Several warriors have been re-enrolled in schools and supported through the scholarship programs


I, personally, have been provided with educational scholarships and bursaries, I have grown in my career path through the leadership programs, I and several other warriors have had the opportunity to travel and provide a voice for warriors that live in low resource settings, highlighting the real life challenges faced."


What should the outside world know from your lived experiences about diabetes care across Uganda?


"Based on my lived experiences with diabetes care across Uganda, it is important for the outside world to understand that Type 1 Diabetes (T1D) is not a priority for policymakers.


There are widespread misconceptions about T1D, particularly regarding children and young adults. Many people believe that diabetes only affects the elderly. This lack of awareness about T1D, especially in children and young adults, contrasts sharply with the attention given to other non-communicable diseases (NCDs), and has significantly impacted diabetes care throughout the country.


The high cost of living in Uganda makes managing T1D particularly challenging. Many warriors often miss their injections because they lack the food necessary to balance their insulin, leading to elevated HbA1c levels and poorer health outcomes."



About Project Boda Boda


Project Boda Boda was born out of the stringent lockdowns during the COVID19 pandemic, where warriors were unable to access insulin and their essential medical supplies. Using a network of motorcycle taxis (Boda Bodas), we were able to distribute insulin and essential medical supplies to warriors in the remotest of regions.


Why is it so important?

Project boda boda is important because it:

·       Provides access to healthcare.

·       It improves warriors’ clinical outcomes.

·       It helps to reduce complications.

·       It helps to reduce morbidity through providing continuous education, asses the home environment and offer support to warriors and caregivers.

·       Through regular HbA1c tests it helps to monitor blood sugar management and alert for warriors at risk of premature complications.

·       Through warrior workshops, project boda boda provides continuous education and strengthen warrior peer to peer community.



Can you share from experience about the work of SNF's diabetes camps, and the peer to peer connection the warriors across Uganda build to support each other?


"Camp provides a supportive environment for warriors to learn, share, grow, and form lifelong friendships without fear of judgment. Every activity is designed to effectively impart and reinforce practical T1D management tools through songs, dances, role play, sports, and more, ensuring that the lessons learned are memorable and impactful.


For example, at Camp Tingathe in Malawi, warriors from Uganda and Malawi connected through shared experiences, such as access to supplies, rationing insulin, and dealing with stigma.


There is no substitute for peer-to-peer engagement, as only peers can truly relate to the daily challenges of living with T1D and at camp warriors walkaway with several shoulders to lean on."



What has helped you most on your journey, Moses?


"The unwavering support of my family has been a cornerstone of my journey.


Having a community of warriors to learn from, share with and lean on, I have found acceptance, understanding, and solidarity empowering me to speak up, speak out and raise awareness at every opportunity."


What would you like to see more of, for African warriors living with Type 1 diabetes?


"I would like to see a world where warriors are thriving free from stigma and discrimination.


I would like to see a world where community awareness is wide spread, a world where the signs and symptoms are as recognizable as those of typhoid or malaria, putting an end to misdiagnoses.


I would like to see a world where warriors have full access to advanced diabetes technology and essential medical supplies."


What is your message to others who are adapting to life with this condition?


"My message to others adapting to life with T1D is that you can do it, you can achieve all your goals. Living with T1D is a journey and it is okay to take one step at a time. You may get tired, you may get frustrated, you may not always get it right however, there is a community of warriors ready to support you every step of the way. Do not compare yourself with others. Focus on your own progress and celebrate your achievements along the way."



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ゲスト
6月08日

To Sonia Nabeta, there are hardly enough words that can be used to express how much the World appreciates you for your devotion towards this calling. You're a Hero to many out there. God Bless.

Regards


Victoria Kivumbi

(Mama's long time friend)

いいね!
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