On a hot August day under the shade of a leafy tree, Derrick Byamugisha shares his perspective on the chronic disease he’s lived with since he was a boy. It’s Day 2 of Camp Tuyinza, the first incarnation of an education camp for children living with Type 1 diabetes sponsored by the Sonia Nabeta Foundation. Derrick has just finished speaking to more than 50 Type-1 Warriors (as the Foundation calls the children) about the importance of healthy physical activity for people with Type 1 diabetes.
“Whatever you love to do, do it,” Derrick told the warriors, who’ve come from across Uganda and as far away as Ghana to find fellowship and education among the only people who can truly understand their condition. “Type 1 diabetes doesn’t control you,” Derrick said. “You control it. You are the master; diabetes is not the master.”
Most of these children and teens have never met another person living with Type 1. In many respects, they live in their own worlds, struggling to find the right balance of insulin and glucose just as they balance hopes, fears and the sense of isolation that trails stereotypical views of a disease that is terribly misunderstood in most corners of the globe.
Derrick, now 26, knows these feelings all too well. When he was first diagnosed at the age of 7, he thought he’d get better in a few weeks, just as someone might who was treated for malaria. But a year went by, then two, then three. He realized as he entered his teen years that diabetes never goes away. The regimen is relentless and unending, every hour of every day: glucose monitoring, carbohydrate counting, insulin injections, repeat . . .
Feelings of isolation and depression sank in with adolescence.
“You try to fit into society, but it doesn’t seem to fit you,” he says, noting that psycho-social support is almost as important as medical support for young people growing up in the shadow of this disease. In Uganda, however, it’s hard enough to diagnose Type 1 and properly treat it, let alone offer the psychological support that will help a young person gain the emotional capacity to effectively manage their condition.
Derrick describes how his peers in high school teased him. The nick-name “Sugar-free” was aggravating, he says, and he did feel the need to hide when the time came to inject insulin. He can’t count the number of dangerous hypoglycemic attacks he had because he just didn’t understand proper management and lacked the community understanding and support system to want to persevere.
There did come a point, however, when he discovered that inner resilience might be one positive side effect of a T1D diagnosis.
“It’s been something I’ve been trying to fight my whole life and I know where I am right now today is because God has brought me this far,” Derrick says. “T1D took every hit at me and I realized that you have to be someone special to go through all this. It took a lot of discipline, a lot of hard knocks and a lot of understanding. It’s still a learning process for me today because everyday is different.”
From his position today as a high school teacher he helps spread T1D awareness among his colleagues and the students he serves while capitalizing on every opportunity to act as a mentor for other young people living with the disease. He knows how valuable connections within the T1D community are. He now champions T1D as an ambassador for the Sonia Nabeta Foundation.
One of the most important mandates this young Foundation embraces is the need to create space for connections with other warriors to grow. Camp Tuyinza in August 2016 was the first wellness camp focused on holistic education and fellowship for warriors and health care professionals. Derrick was one of three mentors to share wisdom and experience with young people in the highly successful inaugural camp.
Derrick will take to the podium at Forum Tuyinza, a meeting for Camp Tuyinza alumni that the foundation is organizing in Kampala on May 20. He will be on the panel and in the company of global Type 1 leaders such as Elizabeth Rowley, Founder of T1International and Gavin Griffiths, Founder of the Diathlete.
These Type 1 advocates will then travel 350 km north of Kampala to attend the foundation’s second camp May 21-25 in the Town of Gulu. Camp “Waromo” (which like “Tuyinza” roughly translates to “we can do this” in local dialect) will once again draw young warriors together with mentors and healthcare professionals, building on all that was learned at the inaugural camp outside Kampala.
There are unique challenges in the north of Uganda presenting families with difficult obstacles to overcome in pursuit of a healthy life for their loved ones with Type 1. The family who came to Uganda from South Sudan as refugees in search of insulin, for example, will hopefully realize that the family who farms the maize fields outside of Gulu wants the same things they do: a stable supply of insulin to keep their children alive, along with the monitoring supplies to do it properly.
Camp Waromo will create space and time to bring these challenges to light and the boys and girls who come together there will find solidarity within their unique community, embracing the opportunity to learn different strategies to cope with and manage this disease. Through Camp Tuyniza, Waromo and all future SNF camps, these young warriors find the strength to manage their condition while teaching others the T1D reality beyond the myths that surround the disease. Derrick is happy to lead the charge to teach, advocate and do what it takes to never let T1D win.