When kids with type 1 diabetes come into the clinic in Kigali, Rwanda, where Dr. Aime Manzi works, they often feel hopeless, assuming their lives are over. But Dr. Manzi – who spent years struggling with diabetes as a child before learning to manage the disease, treat others, and advocate for greater awareness and treatment – knows their lives are only beginning.

“Someone who has come…with no hope, and seeing them leave with hope” makes his work fulfilling, he said.

Some of his young patients have been misdiagnosed before, sometimes repeatedly. Some have been rejected by friends or family, or heard parents worry that paying for medication or schooling for a child who will never be cured isn’t worthwhile.

These are all experiences Dr. Manzi knows. The 27-year-old physician confronted each of them during his own childhood.

Today, he works for the Rwanda Diabetes Association, the organization that supported him with free insulin and monitoring supplies for his own diabetes, taught him the ins and outs of managing his blood sugar, and assured him that his own life was only beginning. It’s also the organization that helped him grow into a dedicated advocate and educator for people with diabetes and their families.

“Trust me”

In 2008, at age 11, Aime Manzi became suddenly unwell. Within a few weeks, despite his young age, he lost more than 30 pounds. He needed to use the bathroom so frequently that his brother complained about sharing a room with him, and his teachers assumed he was looking for excuses to leave the classroom. He often fell asleep in the middle of the day, during class, compounding their frustration.

A local hospital thought he might have malaria or tuberculosis – both common and highly visible infectious diseases in Rwanda. “I think they didn’t think a young person could have diabetes,” Dr. Manzi recalled.

Eventually, the doctors decided he was dehydrated, and instructed him to leave school temporarily, and try to eat and drink more.

That didn’t work, so his parents took him to a traditional healer, who said he had been poisoned and provided a medicine that made him vomit uncontrollably whenever he took it. Then, thinking his illness might be spiritual, they took him to a Catholic priest, hoping for a miracle.

“I started to believe this was a punishment from God,” Dr. Manzi said.

When the young Aime Manzi collapsed, nonresponsive, in the middle of doing a chore, an uncle carried him in his arms for three hours to a hospital in Kigali, where he was diagnosed with type 1 diabetes. Doctors explained that the disease was lifelong and would require daily injections, but Dr. Manzi’s parents were skeptical.

Aime had trouble managing his injections several days later – no one had properly explained the protocols, he said – and his parents assumed he’d probably been cured and no longer needed to buy insulin.

But, of course, that wasn’t possible.

Eventually, Aime was referred to the Rwanda Diabetes Association, a nonprofit organization where doctors showed him how to manage his blood sugar and provided him with a blood glucose meter, test strips, and insulin, all free of cost. Without the support they provided, he said, his parents would not have been able to manage the expense: “It was a lot.”

Aime’s parents were upset to learn that their son would always have diabetes. The expense and difficulty of providing separate, appropriate meals disturbed them, and they assumed he’d developed the disease by eating too much sugar.

“If you eat too much sugar, you’re going to be like Manzi,” Dr. Manzi recalled other parents telling their kids.

School in Rwanda requires tuition fees, and Aime’s parents didn’t want to pay them. Dr. Manzi summed up their perspective: “Instead of spending money on this one, we can just spend money on the other kids who are healthy.”

At a time of heightened concern about AIDS and tuberculosis, two diseases that spread through person-to-person transmission, other parents didn’t want their kids to spend time with him, assuming he might transmit his diabetes to them.

“I was left with no friends to play with,” Dr. Manzi said.

Then the Rwanda Diabetes Association invited him to an overnight camp session – an invitation that marked a turning point in his life.

The other kids at the camp “were young kids, very joyful, doing well at school,” he explained. “They were OK with insulin, they could inject themselves well. I was like, ‘How did you do it?’”

Equally importantly, staff members focused on teaching the campers that their diabetes was completely manageable, and that they could live great lives and achieve long-term dreams.

When Aime arrived home, he told his parents, “‘You don’t believe in me, you think I’m going to die, but trust me: Let me go back to school.’”

He also began volunteering with the Rwanda Diabetes Association, encouraging other kids with new diagnoses to see their diabetes as manageable and their future as bright.

“Change the Whole Narrative”

The last puzzle piece fell into place when Aime asked a science teacher what he knew about diabetes. (“I was testing him a little bit,” Dr. Manzi admits.) The teacher’s answer was full of misinformation: Diabetes could only be passed on genetically, he said, and those who had it were always “one step from death.”

A natural advocate, Aime corrected his teacher, who invited him to speak to his whole class about diabetes – a daunting prospect for a child, but “I wanted to play with my friends again,” he said.

That experience – and reconnecting with his classmates – taught him to love science, and to seek out chemistry and biology classes, where he frequently asked teachers what they knew about diabetes. “Teachers didn’t really know how diabetes worked, they had a negative image,” he recalled. “I liked to challenge them and change their mind.”

Throughout medical school, he continued to volunteer with the Rwanda Diabetes Association, leading camps and peer support groups. Being a doctor makes it possible for him to “change the whole narrative” surrounding diabetes in Rwanda.

“A Happy Man”

Today, Dr. Manzi is a general physician who works with children with diabetes at the RDA’s clinic in Kigali. (He eventually hopes to specialize in endocrinology.) He’s also a committed advocate for his patients, working with their families so they can offer effective support and see the diagnosis in an appropriate context, and educating larger communities about how diabetes actually works.

The Kigali clinic cares for about 500 young patients, he said, and the RDA serves approximately 1,300 across Rwanda.

Rwanda has made tremendous investments in its health system over the past few decades, and Dr. Manzi said children with diabetes often have the option of being treated at “fancy clinics.” But they frequently prefer the RDA, which, while reportedly less fancy, offers “a family of people with the same condition.”

Dr. Manzi loves telling his young patients that he, too, has type 1 diabetes. It’s often the first step of teaching them how much they have to look forward to, and how little the disease will limit them.

For many of them, caring for diabetes would be financially impossible without support. Their family incomes are simply too low to pay for insulin, testing strips, a blood glucose meter, and regular blood panels, as Dr. Manzi’s was during his childhood.

Through the Rwanda Diabetes Association, they get all of these at no cost. The RDA receives insulin from Direct Relief through Life for a Child, an organization that supports young people with diabetes around the world. Through a partnership with Life for a Child, Direct Relief has provided insulin and diabetes management tools to children in 44 countries. In addition, because insulin must be transported and stored under precise temperatures and conditions, Direct Relief provides cold-chain support to many local partners.

Since 2011, Direct Relief has supported the Rwanda Diabetes Association (also called the Association Rwandaise des Diabétiques) with more than $10.9 million in material medical aid, including insulin, glucose test strips, and other essential components of diabetes management.

Just recently, Dr. Manzi began treating a 14-year-old boy diagnosed with diabetes. The teenager, a bright student, reminded Dr. Manzi of himself – “I think I wasn’t as bright,” he said drily – and this boy, too, was in danger of going without an education.

He was having difficulty managing his blood sugar levels at school, where the food provided wasn’t enough to counter the level of insulin he needed to take. Fearing the painful symptoms of low blood sugar, he was even refusing to administer insulin while at school – and beginning to develop complications. His mother, distressed, had begun to wonder whether keeping him in school was worth the money.

“I’m still working to make his glycemia [a medical term for blood sugar levels] fall in the right range,” Dr. Manzi said. “If it all works out, I’ll be a happy man.”