Sarah Biyinzika

It makes me very sad to know many people with diabetes who have lost their lives because they were not able to access insulin and supplies or check their blood glucose levels regularly.

How long have you been living with diabetes?

I have been living with type 1 diabetes for 14 years.

How were you diagnosed?

I started to notice the symptoms of type 1 diabetes, such as extreme thirst and frequent urination, when I was in boarding school. After getting permission from the school nurse to go for a check-up, my mother took me to the hospital where they tested me for malaria and typhoid. The results were negative and the doctor said that there was nothing wrong with me and that I was just homesick. My mother was furious and took me back to school.

The symptoms got worse over the next two months. I lost weight unexpectedly and felt tired. I was eventually found lying in bed unconscious. The school nurse and a friend took me home and I was later transferred to Mulago National Referral Hospital, where I was diagnosed with type 1 diabetes.

How did your diagnosis affect your family or loved ones?

My diabetes diagnosis came as a big surprise to my family. I was young and we did not know anyone in the family with the condition. When my mother saw how skinny I had become, her first thought was that I had HIV. She took the diagnosis the hardest. She blamed herself for causing my diabetes by indulging me with sweets when I was growing up. My relatives and friends did not help by blaming her as well. My mother tried all the herbal remedies that were supposed to cure diabetes. Her disappointment increased when none of them worked.

What are the most important things that have supported your diabetes care?

Diabetes education, peer support and acceptance have been the most important things that have supported my diabetes care. The condition can be really challenging to manage if you do not receive enough information about it. It has been extremely helpful to have friends that also live with diabetes, “dia-buddies,” that can relate to what I am going through. My diabetes management has improved a lot since I made contact with the Africa Diabetes Alliance, a support and empowerment organisation for people living with diabetes. They have provided me with peer-to-peer diabetes education with an emphasis on nutrition, and access to a WhatsApp group that is a great source of information. Accepting my condition and that I am not to blame for it has also helped me to cope with many disappointments. I always keep in the back of my mind that I can only stay healthy if I follow the advice of a health professional.

What has been your lowest point with diabetes?

My lowest point with diabetes came when I first experienced hypoglycaemia while sleeping and did not notice it. I only remember waking up and seeing my mother in tears, with glucose all over my body. She later told me that she had heard an unusual sound from my bedroom. When she came to check, she found me moving violently in bed as if I was having an epileptic fit. I was trying to talk but couldn't. She mixed some sugar with warm water and tried to pour it into my mouth, but I could not swallow it. My teeth were locked together and I kept kicking her when she tried to help me. After a long struggle, she was finally able to get the sugar solution into my mouth and I calmed down. I subsequently experienced similar episodes in public, such as on public transport and at university. I was unable to sleep for almost two months because I was scared that I would die in my sleep if no one was around to help me. I later learnt more about hypoglycaemia unawareness, but it is something that I continue to fear.

Have you ever experienced issues accessing diabetes medicines, supplies and care?

A few years after my diabetes diagnosis, I was very fortunate to receive support from the Changing Diabetes in Children programme. For a period, they provided me with a weekly stock of free diabetes supplies, along with free medical consultations and diabetes education. Unfortunately, this ended when I got older as the programme is restricted to people under the age of 18. The government of Uganda does not provide free diabetes supplies and care, so I and many other people with diabetes have to buy them ourselves.

Most diabetes supplies are expensive for the average Ugandan and are unavailable in the majority of pharmacies in the country. People with diabetes who live outside the capital Kampala often have to travel long distances to purchase them. Even in Kampala, availability is restricted to certain pharmacies. The treatment options available are also severely limited. Small syringes are difficult to find and so we have to use the large ones, which hurt and become blunt quickly.

It makes me very sad to know many people with diabetes in Uganda who have lost their lives because they were not able to access insulin and supplies or check their blood glucose levels regularly.

What would you like to see change in diabetes over the next 100 years?

Over the next 100 years, I look forward to the day where all people with diabetes will have access to diabetes care and technology, no matter where they live.

What does the centenary of insulin mean to you?

The centenary of insulin is a constant reminder of how lucky we are to be alive. For me, it is also a reminder of the crucial role that young people can play to improve the lives of people with diabetes who are vulnerable. If we can do this, there is so much hope for the future.

The Insulin at 100 campaign is supported by