Ugandan T1d Warrior Turned Change-maker

Written by Emmanuel Kisembo
Originally PUBLISHED on
June 9, 2017

When I was diagnosed with Type 1 diabetes (T1D) at age 19, I felt my life had hit a dead end and I would never amount to anything in life. I had spent a full 19 years of my life without inhibitions, without the remotest thought of T1D or the slightest knowledge about the condition, yet here I was, exiting my teenage years, having to reconfigure my life to fit this diagnosis.

I remember being in the hospital shackled with unshakeable depression, wondering how to overcome what would surely follow – funny looks from friends; pity from the community; worry from my family. It was a monumental diagnosis that I felt was insurmountable. It took serious mental reorganization and emotional resilience to move past denial, through acceptance and now to championing and advocating for all things T1D in my motherland, Uganda and beyond.

In my journey thus far I have met warriors (a.k.a. people living with T1D) across the East African region, from all walks of life, and so many, from measly backgrounds, that have managed to live positively with T1D. It is this community and interaction with such warriors that gave me the break that I needed to transform my attitude and find the positive in my diagnosis. Plenty of people living with T1D get stuck in the denial phase and I can relate completely. But I also now believe that my very existence on this planet is to motivate and inspire others to own T1D, accept T1D and thrive with T1D.

Moreover, I come from Uganda, a country that is like many other developing countries, particularly in Africa where T1D is this big mystery, and a diagnosis can be challenging to own because of several reasons. For example, the medical infrastructure is weak; healthcare workers are not as knowledgeable if at all; communities and schools are unaware and unsupportive and T1D is not necessarily on the radar of policy makers. To add icing to the cake, poverty is abundant which only makes T1D that much harder to manage. Uganda has a long way to go to create the environment critical for warriors to survive. So rather than rest on my laurels and feel sorry for myself, I made the pivot to change-maker and disrupter.

Now at 24, life with T1D has become easier because I changed my mindset, my habits and my lifestyle. I have maintained a positive attitude towards T1D to enable me to push my boundaries, and now I can say with fervor that I am a warrior, I am a mentor, I am a counselor and I am an advocate.

This year on World Health Day, I was among eight warriors that were invited to have breakfast with Her Royal Highness the Nabagereka of Buganda courtesy of The Sonia Nabeta Foundation (SNF) of which she is a patron. The theme for the world health day was “Depression, let’s talk!!!” I am all too familiar with depression as many warriors are, so for me, this breakfast meeting was a wonderful opportunity to start advocacy efforts for T1D. The discussion underscored the fundamental need for T1D awareness and advocacy. It was a significant achievement to be able to share ideas with Her Royal Highness the Nnabagereka, a person with infinite reach and influence in Uganda and beyond.

Such public figures are a force of motivation for us warriors in Uganda especially during difficult and hopeless times, when, for example, the financial burden of T1D is scary. The Nnabagereka, for example, has been afforded an incredible platform to educate citizens throughout the country and she is using it. She can persuade parents, teachers, community leaders and legislators to invest their time and money with the mission to support the T1D warrior community in Uganda. She can build on existing relationships with donors, as well as build new ones with policymakers. This breakfast meeting with warriors was a strong first step in that direction and I am hopeful that change is within our grasp.

To add onto this positive trajectory, I recently returned from The Sonia Nabeta Foundation’s Camp Waromo in Gulu, northern Uganda where I met 52 warriors from remote parts of Uganda (and one all the way from Virginia in the United States). I led a cohort of seven warriors as a camp counselor and this was a big motivation to me. There was a lot to learn from everyone’s story. We shared experiences and ideas on how to better our lives. The medical team also helped demystify T1D for these young warriors, many of whom were meeting other warriors for the first time. Participating in Camp Waromo further fortified my commitment to the T1D cause and further showed me that life actually begun the day I was diagnosed.

The biggest win out of Camp Waromo was the advocacy plan that SNF ambassadors are spearheading to get syringes to all warriors in Uganda. Under the guidance of Ms. Elizabeth Rowley, Founder of T1International, eight of us SNF ambassadors (doubling as Camp Waromo counselors) developed an advocacy plan to chase the change we warriors so desperately want to see. We could have selected from a slew of issues – for example, increasing funding for T1D programs, lobbying the government to provide adequate and affordable healthcare and many more, but we settled on syringes. Unlike the developed world where there are other mechanisms to deliver insulin to the blood stream, in Uganda, syringes are our only lifeline.

Come January 1, 2018, the program that has been supplying syringes to warriors will end the supply of syringes but continue provision of insulin. The cost of syringes is heavy, especially given the fact that multiple uses of one syringe is detrimental. Moreover, insulin is futile if we can’t get it out of a vial as such, so advocacy for syringes had to be our mandate. Our advocacy plan has clear goals and objectives and implementation milestones. As warriors we have to let our voices be heard. We cannot effect the changes we so desperately need on our own but our voices will bring policymakers to join our fight. Our voices are loud, getting louder and now with my bullhorn and it is my firm belief that change in Uganda is nigh and first, syringes.

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