Stigma, traditional beliefs deny diabetic children care

May 30, 2014

It is tea break and the children reach for their school bags and remove small gadgets which they later refer to as glucometers.

By Agnes Kyotalengerire

It is tea break and the children reach for their school bags and remove small gadgets which they later refer to as glucometers.  
 
Without fear they prick their fingers on their own. The sight of seeing young children some as little as eight years prick themselves makes my blood cold.
 
“I carry my glucometer to school and wherever I go because I have to check my blood sugar level before meals to ensure it is check; not too high or too low,” explains a small girl of about eight years. 
 
Those whose blood sugar is very low inject themselves on the thighs and stomachs as medication to raise it.  
 
Their thighs and stomachs are full of dark patches and some have small scars.
 
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 A child checking his blood sugar level. PHOTO/ Agnes Kyotalengerire
 
“When I inject myself the wrong way I get wounds which leaves me with scars,” explains 10- year- old Vanessa Ainembabazi while she tries to identify a place to inject. 
 
Ainembabazi was diagnosed with type 1 diabetes at four years.  Because Ainembabazi studies in a boarding school; Peace Modern school in Masaka, she has learnt to administer the medicine herself, in the morning and evening.
 
This was the atmosphere at the recent  Kuongeza Akiili Diabetes camp at Buziga Country Resort in Kampala  where children living with diabetes type 1 converged for four days to learn how to manage type 1 diabetes.
 
Dr. Silver Bahendeka project coordinator World Diabetes Federation said the camps organized annually teach children simple skills of how to manage diabetes on their own; away from their parents.
 
“We take them away from their parents and teach them how to survive; manage their health condition especially when they are at school,” Dr. Bahendeka says adding during the camp, children acquire unique opportunities to share and learn from each other.  
 
Dr Gerald Mutungi the in-charge Non- communicable Diseases at the ministry of health says because children with type 1 diabetes are growing, consequently their doses change.  
 
It is important that through camps that they learn how to inject insulin.
 
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What is type 1 diabetes?
 
Dr Florence Tugumisirize, the chairperson of the national steering committee, Changing Diabetes in Children, says Type 1 diabetes also known as insulin-dependent diabetes is the most common type, mostly affecting children and young adults.
 
Though the statistics on Type 1 diabetes in Uganda are scanty, Dr Mutungi estimates over 300,000 children to be living with diabetes type 1. 
 
Of these about 700 children are enrolled in care and treatment in the 21 health facilities run by Changing Diabetes in children project. 
 
“Tugumisirize says a patient with type 1 diabetes depends on external insulin for life because the body cannot produce enough of this hormone. 
 
Symptoms include; fever, cough, extreme thirst, frequent passing of urine, sudden bedwetting, drowsiness and weight loss because the body cannot get sugar into the cells. 
 
A patient may become unconscious or have difficulty in breathing if he lacks insulin.
 
Care and treatment
 
According to Dr Tugumisirize, most people think diabetes is a health condition for adults, children with diabetes type 1 have not received the attention they deserve. 
 
Dr Tugumisirize says children in rural areas living with type 1 diabetes do not have a specific pediatric clinic where they are examined and treated. 
 
They are still being treated in adult clinics.
 
Glucometers lacking
 
Dr Mutungi says children’s ability to check themselves is limited because they lack glucometers.
 
“Most children end up being tested once a month at the health facilities yet they should be checked three to four times a day,” Mutungi said.  
 
Aside, Dr Gumisiriza says most of the children do not have adequate food to ensure a balanced diet.  
 
This is compounded with the community misconception about diabetes and food. 
 
“People think because they are suffering from a blood sugar health condition they should not take sugar which limits their diet so much and the children get malnourished,” she said 
 
Cultural beliefs and use of contemporary medicine is the other pitfall to the care and treatment of children with diabetes type 1 in Uganda. 
 
“Some parents believe that their children are bewitched and decide to treat them using herbs,” she explained
 
Stigma at school
 
Children living with type 1 diabetes face a lot of stigma from teachers and peers to the extent that some children have to drop out of school.  
 
They call them names like fainting children.
 
The story was not any different for 17 –year- old Moses Kivumbi a student at Buganda Royal University  who discovered he had diabetes type 1 two years ago.
 
At the time Kivumbi was in senior four at Kasubi secondary school, he  had to administer medicine (insulin) three times a day which necessitated him to carry the afternoon dose to school. 
 
Kivumbi would inject himself at lunch time which made students think he was using drugs and reported him to the school administration.
 
His mother was summoned and tasked to explain his health condition. Although the teachers understood that he was diabetic and therefore needed to administer insulin, some students still never understood him and kept   asking him questions.
 
Kivumbi injects himself on the thighs or stomach. He does injection rotation to avoid getting wounds. 
 
Interventions
 
Not all hope is lost for the children, Dr Mutungi   says ministry of health and Changing Diabetes in Children project have partnered with Noval No Disik Company to procure glucometers for all children.
 
In addition, Mutungu said National Medical Stores has procured the short and long term acting insulin for treatment of children with type 1diabetes.  
 
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