I HAVE TYPE 1 DIABETES - and I think you should know

In his blog “I HAVE TYPE 1 DIABETES – and I think you should know”, 21 years old Kisembo Emmanuel tells about the harsh journey from being diagnosed with type 1 diabetes to finally living a normal life again. Along the way, he withdrew from social activities and confined himself to a bedroom - simply because it was too embarrassing. On the financial side, he could no longer afford the strips for the glucometer and things looked very bleak.

31 October 2013 Brit Larsen

Having type 1 diabetes is no hindrance for playing soccer (photo: archkisembo.wordpress.com/)

Uganda, October 2013.  Thanks to a project at the Nsambya Hospital for children living with type 1 diabetes, Kisembo’s life has changed for the better. The project is a partnership between the Uganda Ministry of Health, the World Diabetes Foundation, Novo Nordisk a/s and Roche Diagnostics who in collaboration provide diabetes education and supplies, including glucometers, strips, insulin and syringes.*

This is Kisembo’s story

Am 21 years old and a 3rd year student of Architecture at Makerere University. I was diagnosed with type 1 diabetes on 9th January, 2012. At that time I had just joined University. Prior to this, I had experienced the signs and symptoms like frequent urination and thirst, weight loss, blurred vision though I never felt sick.

It was until they became so severe that I decided to go for checkup and that’s when diabetes was diagnosed. I kept thinking “this is what is going to kill me.” I was hospitalized for one day, getting insulin injections and monitoring. Upon discharge, I was supposed to buy a glucometer, strips, insulin and injections. This was so expensive but my parents struggled and by the end of the day, I had acquired them. I started a life of getting frequent finger pricks and injections. My mother would inject me because I could not do it myself. She would come back home, from work, at lunch time just to give me an insulin shot. The doctor had advised me to embark on a diet of Irish potatoes, plantain and vegetables. It was a boring diet! I would eat different food from the rest of the family. I really felt different and ‘sick’.

As if that was not enough, I bought a big flask, where I would put ice and then dip my insulin in case I had to move or go somewhere. I always carried this with me. This was embarrassing!!!!!! Eventually, I stopped visiting friends, partying, going to church because I anticipated questions which I could not comfortably answer. I had to stop being a resident at campus and preferred to stay home where I could access my treatment and “diet”. I confined myself to my bedroom and the house. I remember at one point, I switched off my phone because friends where always calling to find out what was happening and I was not in position to answer. Using the glucometer became costly because I could no longer afford the strips.

But thanks to the day my mum got to know about Dr. Silver Bahendeka through a friend of hers. I was introduced to Dr. Silver and later registered under the Diabetes Centre at Nsambya Hospital. I was given free insulin, injections, a glucometer, strips and that I was to go back and get more once they got used up. This relieved us of the financial stress, being a private student at university. At least this money would go towards my tuition.

At the clinic, I met children younger than me living with diabetes and even injecting themselves. I was challenged and from that day, I developed the courage to prick my finger and also inject myself with insulin. I was supposed to report to the clinic every Friday to see a doctor and also talk to the nurses. I was taught how to regulate and administer insulin, the importance of physical activity, balancing my diet (carbohydrates, proteins, vitamins) as opposed to my boring diet. I learnt that I can eat anything as long as I take my insulin accordingly.

I also learnt that insulin can be used within 5 weeks if stored under 30˚C. There was now no need of carrying a flask, I would only draw the insulin into the injection, pack it in the small carrier and go anywhere easily and comfortably. I felt empowered and life was starting to be simple. To sum it up, the conference in Arusha, in July 2012, was really motivational, inspirational and empowering to me. I learnt to live a normal and healthy life with diabetes, diabetes self management. I can socialize and compete in life.

Above all, I could now stand up and boldly talk about diabetes. I could now oppress the stigma! I talked about diabetes starting with a few friends, then the entire class, church and now almost every one knows that am diabetic. My friends are very supportive!

The most recent is the 1st Kuongezea Akili Diabetes Camp held at Buziga Country Resort, under the theme “EMPOWERED WE SHALL ACHIEVE”, I met fellow youths, children living with diabetes and we shared experiences and ideas on how to better our lives as diabetics.

So, I have accumulated friends, brothers and sisters with whom we share this journey. I feel accepted and embraced by the diabetic family! Am working towards a bright future because living with diabetes is not the end of the world, besides diabetes is only a condition and not a disease…….

Kisembo Emmanuel
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It is not within the World Diabetes Foundation’s mandate to support the procurement of medicine and this poses a challenge when trying to help children survive and live with type 1 diabetes – a condition which is insulin dependent. However, by collaborating with the industry in the CDiC programme the Foundation is able to support capacity building for care by funding the purchase of equipment for clinics and training of health care professionals, while Roche donates blood glucometres and strips. Novo Nordisk A/S donates insulin and syringes as well as providing logistical support and additional funding for education and training. See more.

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