Type 1 diabetes killing hundreds of children before diagnosis is made

There are approximately 5,000 children with diabetes type 1 in Kenya, but most of them will die of complications before a diagnosis is made . PHOTO| FILE| NATION MEDIA GROUP

What you need to know:

  • Poor control has dire consequences, other than cataracts and the lethal diabetic ketoacidosis, it can lead to kidney failure and amputation.

  • Lack of insulin to control sugar levels is therefore a matter of life or death for these children.

It is estimated that over 300 million people in the World suffer from diabetes; about 20 million of these are in Africa. About 9 out of 10 of these have diabetes type 2, which often occurs in adulthood, from

middle age onwards.

Type 2 diabetes is more common among adults who are overweight or have an inactive lifestyle. In this case, the pancreas makes enough insulin but the body is not able to use it well.

One out of 10 diabetics suffer from type 1 diabetes, mainly found in children. It is not clear what triggers it, but the immune systems of these children attack the cells that produce insulin in the pancreas.

These children therefore cannot produce insulin. No amount of weight reduction or exercise can prevent the occurrence of type 1 diabetes as it appears to be a mal-functioning of the immune system that leads

the body to attack itself. Scientists do not know why the immune system attacks the pancreas. Some think it could be an environmental trigger or perhaps a viral infection combined with genetic susceptibility.

Carol Abidha is a final year Masters in Public Health student at Pwani University. She has lived with type 1 diabetes since she was in Class Five.

For a year, she struggled undiagnosed. She was constantly drinking water, and as a result needed to use the toilet frequently.

Due to the extreme thirst, she carried bottles of water to class and had to repeatedly dash to the toilet. She would also wake up several times at night to use the toilet, which left her feeling fatigued and

constantly irritable. Although she was constantly hungry and eating, she got thinner and thinner. Her mother sought help from various hospitals, but it was only when she collapsed and was admitted in hospital

that a diagnosis of diabetes was made. Her life changed.

“When I was discharged, a nurse from the mission hospital I was admitted in would come to inject me after every meal. She then taught my mum and I how to do it.

In my 10-year-old mind, I thought diabetes was a short-term disease, and that the injections would one day stop, so initially it was exciting. My thighs got sore after sometime and I had to learn how to inject

my stomach. My mum would inject my upper arm when she was home. It was extremely painful and I cried a lot.”

Her parents were desperate to try anything that would bring the injections and the pain they brought to an end, that they even tried traditional healers.

“Some of them would tell me to stop taking insulin while taking the herbs so that I could see the effects of their treatments. There were no changes though, and I often ended up sicker,” said Carol.

SKIPPED SCHOOL

Her schoolmates in primary school had no idea what she was ailing from, and when one of them spotted her injecting herself, rumours spread in the school that she was abusing drugs.

She had to skip school for a few days to avoid facing those rumours.

She did well in her primary school exams and was admitted to Loreto High School in Limuru. Although her parents worried about how she would cope in boarding school, it turned out to be just what she

needed.

“The school nurse would inject me after meals, and the school provided me with bananas, milk and wholemeal bread every day without asking my parents for additional money.

Once my classmates learned about my condition, they all started to carry bottles of water to class, and so it became normal to need a toilet break frequently in my class. I couldn’t have asked for better

classmates.”

There was a problem though, the dose of insulin she was using was the same one prescribed for her when the condition was diagnosed in primary school.

The sustained inadequate insulin levels were taking their toll on her body - she developed eye cataracts, and in 2009, just after completing secondary school, she was admitted to Kenyatta National hospital with

diabetes ketoacidosis, a side effect of uncontrolled diabetes.

By the time she got to hospital, Carol was in a confused state, and had to be tied to the hospital bed. She then went into a coma for two months during which all hope for survival was lost.

Against expectation though, she regained consciousness.

“When I came to, I vowed not to let the disease control me like that again. I accepted it as part of me and decided to live my life to the fullest,” she says.

She found a doctor who helped her to adjust her insulin dosage to correspond with her age, and when she finished her undergraduate degree at Pwani University, she had her first cataract removed.

According to the International Diabetes Federation, there were 39,000 cases of type 1 diabetes in Sub-Saharan Africa in 2013.  The number of children with type 1 diabetes in Kenya is unknown though.

Dr Thomas Ngwiri of Gertrude’s Children’s Hospital in Nairobi, estimates that there are about 5,000 children with type 1 diabetes in Kenya, but most of them die before diagnosis from complications.

At the moment, his team is monitoring 1,000 children in various programs around the country.

Carol Abidha, a 25-year-old Pwani University student who has been battling Diabetis Mellitus disease since she was eight years old during the interview. She is currently pursuing a Masters in Public Health at the University. PHOTOS | KAZUNGU SAMUEL

Dr Ngwiri and colleagues published a paper in the International Journal of Endocrinology in 2015, where they closely monitored 82 children with type 1 diabetes who were receiving treatment at Kenyatta

National Hospital and PCEA Kikuyu Hospital. Dr Ngwiri reported that only 28 per cent of these children were adequately controlling their sugar levels.

The study reports a limited supply of insulin in hospitals and a total lack of self-monitoring of blood sugar levels due to lack of money.

Although the Kenyan government subsidises insulin in public hospitals to the tune of 15 per cent of the price in private pharmacy outlets, it is still beyond the reach of many.

According to Dr Ngwiri, the monthly cost of treating a 10-year-old child weighing 30kg would be Sh1,000 for the insulin, another Sh1,000 for the blood glucose testing strips, another Sh1,000 for the

accessories, including needles, lancets, swabs and syringes. For the most basic insulin formulations, a family would need to spend Sh3,000 per child, per month.

For more intensive treatment and monitoring, the cost could soar to Sh10,000 a month.

Some families try to keep the cost down by giving lower doses of insulin to the sick children to ‘stretch’ the treatment, but poor control has dire consequences, as Carol would tell you.

Other than cataracts and the lethal diabetic ketoacidosis, poor control can lead to kidney failure and amputation. Lack of insulin to control sugar levels is therefore a matter of life or death for these children.

Currently, in Kenya, there are programs such as Changing Diabetes in Children, which supplies insulin for free in 10 counties. Another program, Life for a Child, is an international effort by the International

Diabetes Federation that benefits children at Kenyatta National Hospital, however, these programs are limited in their reach, therefore there are still thousands of children in dire need of insulin.

RESEARCH PROVIDES GLIMMER OF HOPE

An article published in the prestigious Nature Medicine journal in October 2015 by Vegas and colleagues, from the Massachusetts Institute of Technology in the USA, may provide a glimmer of hope for people

like Carol. Mice with induced type 1 diabetes had insulin producing cells implanted in them.

These mice were able to control their sugar levels as well as mice that were not diabetic, without rejecting the implants.

If this outcome can be replicated in humans, it would strike out the need of a lifetime of self-injecting. However, it takes decades before research can move from animal experiments to human trials and then to

the market. In the meantime, Carol and others like her must inject themselves several times a day with insulin to stay healthy, but as she has found out, it need not be all doom and gloom.

 “Children with type 1 diabetes can be productive members of the society - no one should convince you that your child is bewitched.

Also encourage your child to interact with other diabetics so that they know that they are not alone. Diabetes is no reason for a child not to achieve their dreams.”

 

The writer has a PhD in epidemiology, a branch of public health.                                                                                       

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CAUSES OF DIABETES

Diabetes is a disease caused by lack of insulin or the inability of the body to use insulin. Insulin is produced by the pancreas, an organ that lies behind the stomach in our abdomen.

When we eat carbohydrate foods such as ugali, potatoes, rice and bread, the body breaks them down to a sugar known as glucose.

The cells in our bodies will use this glucose to generate energy that allows us to work. Insulin opens the door of our cells and allows glucose into our body. Insulin also saves excess glucose in our liver as glucogen.

In the absence of insulin, the glucose in the blood cannot get into our body cells. Excess glucose can damage body organs, it is like a poison that needs to be gotten rid of quickly.

The kidney therefore must work overtime. This is the reason people with undiagnosed diabetes urinate frequently and therefore have to drink a lot of water.

Since people with diabetes are not able to use the glucose in their blood, they are often tired and irritable.

They also have wounds that do not heal easily as insulin also holds the key to allowing amino acids, which repair and build muscles, into the wounded body cells.

Prolonged exposure to high sugar levels among people with poorly managed diabetes results in damage to nerves, leading to loss of feeling.

The feet are extremely vulnerable. Cuts and bruises can go unnoticed, leading to diabetic foot ulcers. Since lack of insulin means the body does not heal easily, these foot ulcers get worse and spread or become

gangrenous (start to rot), leaving doctors no option but to amputate.

The side effects of untreated diabetes, whether type 1 or type 2, are many, as high sugar levels can damage most body organs. It is therefore essential that the disease is diagnosed and managed as soon as it appears.