12 years have gone by since I was diagnosed with type 1 diabetes. This was a very hard truth to accept, but with time, I managed to. I have faced many challenges, including medical errors, such as late diagnosis of type-1 diabetes and assuming another medical condition, inappropriate insulin dosage, and little to no insulin injection counselling, plus stigma and more. I not only celebrate the fact that I am still alive but also the start of a new journey—a journey that is full of obstacles but also a journey to make my voice heard in order to bring change. A journey to help people living with type 1 diabetes.

Coming to terms

I was diagnosed while in primary school, and it was not easy for me. At first, I did not really understand how demanding the condition is and how managing it can be exhausting sometimes. I thought I was going to be on insulin treatment for a short period of time, and then be okay just like any other condition, like malaria, is treated. It was after I found out that it is a chronic condition that things started to be hard. I started thinking about how I will be injecting myself for the rest of my life, always checking my blood sugar level and eating accordingly. I started developing chronic headaches, and also failing my classes.

This went on till I started attending youth camps for people living with type 1 diabetes organised by the Rwanda Diabetes Association. I met other young people with the same condition—I was not alone— we shared life experiences, and I started to love myself again.

Hardships

Diabetes affected me in more ways than one. I almost gave up on life because I could not handle injecting myself every day and all the bad things that people would say about me.

Some people started saying that diabetes is a deadly disease and that I would be dead soon.

They wondered why I still went to school yet I did not have a future. I was bullied by one of my classmates who used to address me as a ‘sick person’. As time went by, I learned a lot about my condition, that a person can live normally if the condition is well managed, and it did not stop me from completing my studies, and doing what I love.

At first, I struggled with what I should and should not eat. But I later learned that there is no specific diet for a person living with type 1 diabetes. You can eat the same healthy diet as everyone else. But, it is important to adjust the insulin dose with the type of food eaten and the blood sugar level. This is because different types of food have different levels of sugar.

Helping others

The youth camps made me realise that I should not pity myself, but rather be someone who can speak for people living with type 1 diabetes.

I had the opportunity to be part of the Voices of Non-Communicable Diseases and Injuries (NCDIs) Poverty Advocacy Fellowship, from the NCDIs Poverty Network through the Rwanda NCD Alliance. The fellowship aims to help influence a call to action around NCDIs in the poorest countries, where we work to develop plans that focus on building a community of people living with NCDIs (PLWNCDIs), amplifying and leveraging their experiences, and working together on disease-specific issues to co-develop and implement advocacy projects.

I have had opportunities throughout the fellowship, where I have participated in the first knowledge exchange of the NCDI Poverty Network, with the Topic: Leading with Equity Prioritising Severe NCDs that Impact Children and Young Adults. The discussions were about how meaningful the work of NCDIs is, how it impacts our lives, how we get the community involved, and the future vision of NCDIs.

I have also been given the opportunity to participate in the East Africa Regional Meeting, commemorating World Diabetes Month; November in 2021. I was invited to share my 11 years of living with type 1 diabetes. It was a great opportunity for me to be the voice of other people living with the illness in Rwanda and make sure that our voices are amplified.

I have been volunteering with The Rwanda Diabetes Association (RDA) in some advocacy, education, and awareness projects, and got the opportunity to volunteer in Diabetes Youth Camps that were organised by RDA. It was a great experience where I was able to help train young people living with type 1 diabetes, as well as learn. Through RDA, I have been chosen to be part of the International Diabetes Federation (IDF) Young Leaders in Diabetes (YLD). The programme aims at creating a voice for young people with diabetes worldwide. It provides young people with diabetes education to empower and help them become efficient advocates for themselves and other people living with diabetes.

The future

My goal in life is that diabetes will never hinder my dreams. I aim at being a great advocate for diabetes and other NCDs, so as to eliminate any misconceptions and avoid preventable deaths.

I advise people to go for regular check-ups and screenings. When NCDs are diagnosed at an early stage, they are easily managed, and also, reduce common risk factors such as tobacco use, harmful alcohol use, physical inactivity, and unhealthy diets.

To my fellow diabetes champions, let’s keep fighting! Diabetes won’t hinder our dreams.