THE 2019 IDF-YLD TRAINING SUMMIT IN BUSAN AND ONGOING ADVOCACY

Written by Sarah Biyinzika, YLD Uganda representative, YLD Africa Region representative, 2019-2021

Talking about challenges faced in managing diabetes in my country Uganda

Allow me take you through how I got to participate in the International Diabetes Federation (IDF) Young Leaders in Diabetes (YLD) 2019-2021 Program.

After a spell of poor management and health challenges, I got involved in diabetes advocacy. In 2018, I started a blog called The African Diabetic (which will soon be changed to The Ugandan Diabetic) where I shared my stories, challenges and triumphs as a type 1 diabetic (T1D). I did this in an attempt to get back on the right track with my health as well as reach others that felt alone in the struggle. I also started my search for other Diabetics and that’s how I met Mukantwari Edith Prudence Sabiiti. Not only was she a fellow Type 1 Diabetic diagnosed the same year as myself, she was also a nutritionist. Since nutrition was the challenge I struggled with the most, meeting her was the best thing that could have happened to me as a diabetic. I also later learnt that she was a founder of a patient organisation called Africa Diabetes Alliance that empowers diabetics to disarm diabetes through diabetes education, psycho social support and advocacy. That’s exactly what I was looking for, and volunteering with the organisation is one of the best decisions I have made this year. It has not only empowered me as an individual but given me a platform to empower others.

President, Uganda Diabetes Association engaging young people living with diabetes ahead of World Diabetes Day Celebrations in Uganda

Following my active role in the organisation, Edith recommended me to the president of Uganda Diabetes Association, Dr. Lumu William for the nomination to the IDF Young Leaders in Diabetes Program (YLD) 2019-2021. The IDF-YLD Program empowers young people living with diabetes to become advocates for themselves and others living with diabetes worldwide. The Young leaders are committed to raising awareness about diabetes by being a powerful voice for prevention, education, access to quality care, prevention of complications in both type 1 and type 2 diabetes as well as ending discrimination and stigma related to diabetes.

Dr. Lumu William nominated me, and I applied and got selected as a YLD trainee 2019-2021. The Program launched in April 2019 with educational activities such as webinars that focused on diabetes key topics of interest, information on how to support IDF global campaigns and activities to advocate for the inclusion of diabetes in the global political agenda and responsibilities such as developing individual diabetes-related projects that respond to the needs of people in our communities, supporting IDF regional action plans, supporting IDF advocacy campaigns etc.

IDF also organised a face-to -face YLD Training Summit in Busan, scheduled for the first week of December 2019. Invitations were based on the compliance of YLD trainees to their obligations that included participating in compulsory webinars, engaging in IDF campaigns as requested and submitting an outline for their 2020-2021 project plan. I fulfilled all the above and did an individual project outline that focused on diabetes awareness-raising and education with the support of my member association president, which earned me an invite and full sponsorship to the YLD Training Summit.

Dia-buddies unite

The training summit started on 3rd December, 2019 at the Busan convention center (BEXCO) with 63 Young leaders, Trainees and Mentors from 48 countries. Each one of us was asked to introduce him/herself stating the countries we were from, the type of diabetes we had, how many years we had been living with diabetes and something curious about ourselves. It was a brilliant way to get to know each other and share some personal information. It was followed by welcome remarks from Asst. Prof. Dario Rahelic the YLD Program chair who explained to us what IDF is about, what the YLD Program is and it’s framework. We also had a story telling session by Alexander Edenwind, the creator of “About a Diabetic” project who also happens to be a type 1 diabetic. He shared with us the importance of personal stories and tips on how to effectively tell our stories.

We had so many great speakers like Prof. Amelia Dizdarevic who talked about thyroid disorders in relation to type 1 diabetes, Diabetes and Polycystic Ovarian Syndrome by Prof. Djuro Macut, Prediabetes by Prof. Zelija Velija Asimi and Carbohydrate counting in children and adults by Prof. Tatjana Milenkovic. Most of this information was new to me and by the end of these sessions, I had learnt something new and important that I could share with my fellow diabetics back home. At the end of day 1, each one of us was asked to record a 60 second video testimony stating our names, age, country of origin, type of diabetes and how many years we had it, our IDF member association, main diabetes related priorities in our respective countries, why we joined the YLD Program and what we hoped to learn from the Program in the next two years.

Day 2 of the YLD training summit

Day 2 followed with more fascinating presentations with my favorite being about Diabetes-Related discrimination and Stigma by Renza Scibilia and Chris Alfred who are Diabetes bloggers and advocates. They talked about the importance of language around diabetes to fight discrimination and stigma. And also shed some light on how some type 1 diabetics and parents of children living with diabetes get defensive when explaining the differences between type 1 and type 2 diabetes. And in doing so, they end up stigmatising type 2 diabetes by making it look like they brought it upon themselves while their children did nothing wrong. This really hit home on my part because for the best part of my life with diabetes, I always felt the need to explain that the two types were different because one couldn’t be prevented and the other was due to lifestyle choices. Bringing this to our attention made me realise that I’d also been part of the problem as well and this made me really sad. We ought to educate ourselves and support each other regardless of the type of diabetes we have because being discriminated by our own (diabetes community) is the worst kind of discrimination. They also encouraged us to call certain people out (such as healthcare professionals) when they make certain comments when referring to diabetics like “recalcitrant,” “non-compliant” or the common bigheaded or stubborn often used in African countries because such words have an effect on one’s health and therefore if we permit it, then we are promoting it.

 

The 5k@IDF walk/run in support of World Diabetes Foundation

Day 2 ended with the 5K@IDF run/walk that was done to raise awareness about the benefits of a healthy lifestyle in preventing type 2 diabetes and managing all types of diabetes. It also acted as a fundraising drive to support the efforts of the World Diabetes Foundation (WDF) that funds various research, healthcare training and capacity building activities fighting diabetes in developing countries with a vision to alleviate suffering related to diabetes and its complications among those least able to withstand the burden of the disease. Over 300 citizens of Busan and IDF 2019 delegates got involved. I, unfortunately, came in among the last people, but it was an amazing experience that am glad I got to participate in.

Best IDF-YLD training selfie moments

Day 3 and 4 were filled with more educative sessions and presentations with tips on how to become an efficient advocate that was presented by Chester Aprinlianiano and YLD prize Program winners sharing their experiences of YLD projects, how to plan for the individual projects and how to collaborate with our respective IDF regions.

And on Friday 6 2019, the training summit came to an end with tips on how to take the YLD Program to the next level through our individual diabetes related projects that are meant to commence by January 2020-2021. And lastly we had the YLD elections for regional representatives-elect. Every two years, on the occasion of the YLD face to face training summit, an election takes place to choose the regional representatives-elect to support the existing regional representatives in coordinating the regional work and activities. Those elected serve for two years and then become regional representatives themselves. Two months prior to the training summit, a call for candidates was open and I challenged myself with my first leadership attempt and stood for the position. Campaigns were launched, fellow YLDs voted and I feel so humbled to be chosen as the representative-elect for the African region 2019-2021.

The YLD Family

Before I conclude, I would like to express my gratitude to every single one of the YLD members in the program and those from the African region that attended the training summit and those that weren’t able to because of various reasons, everyone that voted for me, thank you so much for believing in me. I left Busan with beautiful friendships with fellow YLDs around the world. Unique bonds that I will cherish forever, with one my favourites being my roommate from Madagascar called Manoa Ezra. I have never met someone with such a beautiful heart and personality. A big thank you to International Diabetes Federation for bringing all of us together. I feel privileged to have been part of such an amazing team of people. I was so inspired by everyone’s story and experiences and I left Busan empowered, motivated, confident, and with lots of positivity and passion. I can’t wait to engage, share ideas and spread the knowledge I acquired to improve the lives of people with diabetes in my community and partner with more motivated warriors around Africa to advocate for people living with diabetes because I believe no child or adult should die from diabetes.

 

My proudest moment of 2019

Last but not least I want to express my endless gratitude to the President and Executive Committee, Uganda Diabetes Association for trusting me and supporting my efforts every step of the way. Edith Mukantwari has been a great influence on me. She and the Africa Diabetes Alliance have believed in me, trained and empowered me and given me various opportunities to speak, share, contribute and build community. They have given me a great platform to become a better Diabetes advocate. Their endless and continuous support is unwavering and I could not be more grateful. I definitely have to mention the CDiC project that I am privileged to be a part of, who continually provide my medications, strips, doctor's appointments such that I can be healthy and pursue my dreams and passions. I know I truly wouldn’t have done any of this without all of these amazing people.

Most of all, this journey has showed me that this fight is for all of us and we cannot just leave the fight to any one individual, profession, country, or organisation. We shall only move forward swiftly if people living with diabetes and their families in Uganda and all over Africa, boldly, actively and audibly join the fight against diabetes too. I have already met some amazing diabuddies on this journey taking positive steps to improve their health and management, pursuing their dreams and passions with determination and they inspire me so much. However, I look forward to having more people living with diabetes getting empowered, speaking up and paying it forward by reaching out to others as well. A better future for people living with diabetes in Africa begins with each and every one of us.

 

Let the advocacy journey continue in earnest...

And so the advocacy journey continues and I cannot wait to share with you all what we shall be up to in the next 2 years. I wish you all a merry Christmas and a prosperous New Year 2020. Let’s continue disarming Diabetes daily in Africa. It's an African movement.