My journey to thriving with type 1 diabetes

Written by Sarah Biyinzika

At the Uganda Diabetes Association Annual Scientific Conference, 2019

I would like to welcome you once again to our Africa Diabetes Alliance blog. My name is Sarah Biyinzika and I come from Uganda. I am 26 years old and have been living with type 1 diabetes for 14 years now. I have come to realise that there is nothing like a perfect diabetic and trying to be one is simply asking for major frustration, but we can learn to understand how our food, bodies and medications work together to prevent high blood sugar and low blood sugar, and stay safe. However, if setbacks do happen, it is okay, and we should simply know how to solve the challenges that are bound to happen. I know, though, that there is such a thing as a bad diabetic and I believe I was once one. When I was diagnosed, apart from the basics like which insulin to take, the dose and what not to eat,  I wasn’t given much information and it didn’t occur to me that there was information that I needed to have so I never bothered to research it either. As a result, I lived in denial for a long time and liked to pretend I was a non diabetic. The problem with that is, while I felt okay on the outside, I didn’t realize that I was messing up my organs. My denial also birthed a negative attitude and I totally rejected all the doctor’s advice like exercise. Exercise was one of those things that I strongly refused to do even when I knew it’s numerous advantages. To top it off, I had to deal with my Mum’s suggestions to use herbal remedies or "cures". I understand that as a mother she was desperate to save me and tried all kinds of local herbs and supplements in hope that they would cure me, but to no avail. With that said, it’s been a roller coaster  from  trying to cope as a type 1 diabetic in boarding school to going through adolescence to finally trying to make better diabetes management decisions as a young adult.

Presenting at the UDA conference, 2019

Just when I thought I had survived the herbs, i experienced my first severe hypoglycemic (low blood sugar) event. It was the most scary thing I had ever encountered. Unlike my previous hypos where I was fully aware of the signs and treated them in time, I didn’t feel anything this time. One night i was sleeping and the next thing I remember was my mum standing on my bedside crying. She was asking me what was wrong and no matter how hard I tried, I couldn’t speak. My tongue felt heavy, my body was stiff and I was mumbling uncontrollably. After a lot of confusion and fear, my mum eventually managed to mix lots of sugar with warm water and forced it down my throat amid a lot of resistance from me. After about an hour, the horror came to an end leaving me confused, vulnerable and dependent on other people for survival. That was followed by more severe hypos in far worse scenarios from passing out in public transport a couple of times to passing out at friend’s house when I had gone for a sleep over. There were nights I couldn’t sleep because I was worried that I wouldn’t wake up alive. And till today, my mum still lives in fear and has never allowed me to stay on my own. This turned out to be a big wake up call for me so I begun my search for improvements.

In my quest to better my diabetes management, I met Edith Mukantwari at St. Francis Hospital, Nsambya Paediatric Diabetes Clinic. My life took a good turn from that day and the information she shared with me completely changed my outlook on the condition. Her being a nutritionist greatly helped me improve my diet which in turn improved my diabetes management. In such a short period of time my HbA1c improved from a 14% to a 5.9%. I was bouncing with so much joy and it even pushed me to get better. I also started exercising which has done my sugar levels a lot of good and helped me understand my body even better.

At the annual diabetes education event held by Africa Diabetes Alliance

Africa Diabetes Alliance also has a WhatsApp group with over 60 type 1 diabetics and the emotional support on there is immense. We share experiences and advice and I finally feel that I have a bunch of amazing people that understand what I am going through. It’s a great support platform for all of us. I recently started volunteering with the organisation and this has built up my confidence in ways I can’t even explain and also given me an opportunity to talk and advocate about  the things that matter the most to me (type 1 diabetes). Through my volunteer work with ADA, they recommended me to the Uganda Diabetes Association, to join the young leaders in diabetes (YLD) program, for which I am currently a trainee for the next three years. This is the first time Uganda has been able to join the worldwide program and it is a privilege for me to represent people living with diabetes in my country. YLD is an International Diabetes Federation program that empowers young people living with diabetes through education to become efficient advocates for themselves and others, and we are already doing just that. I have a newfound sense of purpose and plan to pursue a nursing course to better help other people living with diabetes in my country. Certainly, I have also greatly benefited from attending the monthly Diabetes and Nutrition classes held by ADA that have made my diabetes management less confusing and so much easier, and my health so much better.

IDF Young Leaders in Diabetes Advocacy

Edith and I also managed to hike mountain Muhavura last year in December to raise money for diabetes medical alert bracelets for children and young adults living with type 1 diabetes. It was an experience like no other that I never thought I would do especially with diabetes as a possible hindrance. Still, with Edith’s help I also represented ADA at a couple of diabetes related conferences which gave me an insight on diabetes advocacy and the needs of the diabetes community. ADA is about hope, it's about giving, understanding, empowering, teaching, growing and improving and my experience working with ADA has been all about growth. ADA gives me hope for the future and that people who will be diagnosed later have a strong support to lean on, which we did not have in our day.

Taking the charity climb to Mt. Muhavura

Africa Diabetes Alliance has been more than a blessing to me. Their support is unmatched and the knowledge the team provides has transformed my management and so many others' for the better. Edith really inspires me and pushes me to be a better at my management and my life and that’s something I will forever be grateful for. To Edith, thank you for being so selfless and fighting for this great cause. To the Africa Diabetes Alliance family, thank you for being so supportive to all of us. Together, we are disarming diabetes daily.