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Pelumi is a 12-year-old boy living with Type 1 diabetes. Diabetes is a metabolic disease that causes high levels of sugar in the blood.  It affects 3.9 million people in Nigeria, and it is prevalent among children and adolescents. While the causes of Type 1 diabetes are unknown, it is suspected that it occurs when the insulin-producing cells in the body. Insulin is crucial to the conversion of sugar or food to glucose, which the body needs to function.

To commemorate World Diabetes Month, I spoke to Pelumi, a 12-year-old boy living in Nigeria and his mother, Celine, about what it is like living with diabetes. They talk about their daily challenges and their hope for the future.

Celine

It started two years ago in November 2018. For about two weeks, he was peeing  very often. He was always tired when he came back from school and would sleep, which was strange because he normally doesn’t sleep in the afternoon. He also used to complain about headaches.

What really made us take him to the hospital was that he lost weight despite being skinny. I assumed it was because he was maturing into his pre-teens. I noticed he was always going to the toilet, about three times at night, which was strange. One Sunday, his dad took him to the hospital, assuming he had a urinary tract infection. They ran tests on his urine, blood etc. and found nothing wrong.  The doctor on duty recommended a blood sugar test, and we found that his blood sugar level was around 408 mg/dL. In a healthy person, it should be between 100 mg/dL and 130 mg/dL. They immediately called the specialist paediatrician and the first question she asked was, “Is the patient still conscious?” 

We didn’t immediately recognise the severity of the situation. He was admitted into the hospital, and when on the second day, they wanted to start administering insulin to him, I said, “No, it is not my portion. My child cannot have Type 1 diabetes.” 

Pelumi

Since I was diagnosed with diabetes, I’m not allowed to eat anything I want. Before my diabetes, I used to love pizza, ice cream, peanuts and meat pies, but now, I can’t eat any of those things unless I bring my blood glucose under control. This makes me sad.

I didn’t want to tell anyone in school about my diabetes, but I eventually had to tell two of my friends.

Every morning, when I wake up, I do my blood sugar tests. To do this, I wash my hands and prick my finger with a special pin. I then collect the blood with the test strip and I insert it into a glucometer. The glucometer displays my blood sugar level on the screen. 

Sometimes it’s high, other times it’s normal or it might be low.  If it’s too low, it means I’m hypoglycemic. I’d eat a cube of sugar or drink a quarter of a bottle of coke to increase it, wait 30 minutes and do the test again. If it’s too high, I’ll take an injection shot of insulin. 

I can take my insulin injection into four parts of my body: my thighs, upper arms, my buttocks or my stomach. I prefer taking it in my thighs because other parts of my body are more painful.

If it’s normal, I’d take my normal insulin dosage and eat my breakfast. In the afternoon, I check my blood sugar again, and if it’s too high, I take my rapid insulin to bring my blood sugar down before eating lunch. 

Celine 

There are many types of insulin. Pelumi uses rapid-acting insulin and long-lasting insulin. Before, he only used to take long-lasting insulin twice a day, leaving the rapid for occasions where he wants to eat stuff like pizza. However, during the lockdown, everyone was home and there was no real physical activity. We were all eating a lot, so his blood glucose went out of control. We had to go back to the hospital and after a lot of tests, his paediatrician recommended he started using insulin injections three times a day: the long-lasting insulin in the morning and night, and the rapid insulin before lunch.

We monitor his weight very closely now because pre-teen and teenage years are often the most difficult for type 1 diabetics. At that age, they eat a lot of food, burn energy faster and they need to grow. Inasmuch as you’re worried about blood sugar levels, you also want him to grow strong and gain healthy weight.

My husband and I also scrutinise his body for changes, particularly his skin. He’s the handsomest boy on earth. When he starts to look a certain way, perhaps he has bags under his eyes or his lips are dry or his skin changes, we notice

Three weeks ago, I noticed that he was looking skinnier, so I weighed him. He had dropped from 40kg to 38kg. The day before, he slept twice and kept saying he was tired when we asked him to do some chores. At that point, his dad got worried and took him to the hospital. 

They ran tests and found that his blood sugar was at an incredible 453 mg/dL again. We were shocked and refused because he had been doing his tests regularly and his blood sugar had been normal. We thought our glucometer at home was broken and I rushed home to get the machine. We ran the test again with our glucometer and the result was the same. We were shocked. So, I checked the memory of the glucometer to check the test results of the past few days and found that his blood glucose had been persistently high in the last few days. I screamed.

Because he runs the tests himself in his room, we regularly ask him what his test reading was after every test, and for two whole weeks, he had been lying actively that it was normal. 

You see, there are two special things about my son: he’s the most compassionate person in the world and he does not lie. I understand how that might sound, but it’s true. So we were shocked that he had been lying about his test results. I asked why he had been lying to us. 

Pelumi

I lied because I wanted to be normal. I’m tired of not being able to eat anything I want. I want to eat the snacks I used to love before I had diabetes. 

I was admitted to the hospital for four days and missed a test in school. I’m never going to lie about my blood test again because those were the most horrifying four days of my life. I wasn’t allowed to eat for 36 hours and I had to be rehydrated. Diabetics get dehydrated very quickly because the body is trying to get rid of the blood sugar so they pee a lot. I was hooked up to two IV drips at the same time, one for sodium-potassium and another for insulin and antibiotics.

Celine 

Because he’s young, he thinks the major problem with his condition is about lacking access to food, but there are other issues involved too. For instance, we can’t just up and go out. We need to plan every step of our outing. We can’t just drop him and his siblings at his grandparents’ house. We have to plan every meal and pack all the insulin he’ll need while he’s away. If he wants to go to a party, we also need to plan. All these take a heavy toll on a little boy. 

It really breaks my heart and shakes my faith because I wondered that if indeed my God was a loving God, why would he let this happen to my son who has done nothing to deserve this. People would say “God loves us, he understands.” But that’s not enough. I need to know why. 

I’m also worried sick that because we’re in Nigeria and people don’t know much about diabetes or insulin and if he faints on the road, people would just be pouring water on him. In his new school, his teachers know about his condition and ask whether he needs to avoid sports. I say no, he needs to do sports. 

We’re always careful about injuries too because diabetics have to be cautious. Injuries get quite complicated so we are always checking him out for injuries and even insect bites because that can get ugly too. 

Pelumi

I don’t even step out of the house into the compound without wearing my slippers. I’m that careful. 

I enjoy physical activities like playing football and riding my bike but we have a small compound, so I can only play at my grandparents’. Their compound is extremely big. I also play the piano and I draw and make animations too. 

Celine

It’s really important for people to know that the difference between the types is that type 1 is not as a result of an unhealthy lifestyle, unlike type 2. The body’s pancreas is simply unable to produce insulin. In the case of my son, his antibodies started attacking his pancreas, preventing it from producing insulin. It’s also genetic. Pelumi has an uncle who also has had Type 1 diabetes since the age of 2.

It’s also important to say that diabetes isn’t just caused by eating processed sugar. It’s also about your carbohydrates. You have to eat plenty of vegetables, balance your diet and exercise regularly. If you’re predisposed to diabetes and aren’t doing these things, it will very likely happen. 

I’m very optimistic. His uncle who lives with type 1 diabetes turns 50 this year and he’s doing very fine. We’ve been hearing about some medical research going on about an artificial pancreas which might be available in the nearest future. We are very hopeful.

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