A mother’s efforts to advocate for diabetic children in northern Uganda

By Tobbias Jolly Owiny

Raising a child is ordinarily an exhausting and demanding experience. It becomes an even more stressful and daunting experience when the child has type one diabetes.

Joanita Ayenyo, is an administrator with Refugee Law Project in Gulu Town whose life changed five years ago when her daughter, Janae Apio, was diagnosed with type 1 diabetes (T1D) at Lacor Hospital in Gulu, aged three.
Getting to terms with the fact that her daughter was living with a dangerous and incurable disease was difficult.
“T1D is a full-time balancing act requiring constant attention to avoid acute, life-threatening hypoglycemia (low blood sugar) or the long-term damage done by hyperglycemia (high blood sugar). I did not sleep for a whole year from the time of her diagnosis. I often lay awake in bed waiting for any sound from her room. The sight of my baby gripped by convulsions traumatised me for a long time,” she relates.

Diabetes, often referred to by doctors as diabetes mellitus, describes a group of metabolic diseases in which the person has high blood glucose (blood sugar), either because insulin production is inadequate, or because the body’s cells do not respond properly to insulin, or both.
Without insulin, experts reveal, sugar stays in the blood and can cause serious damage to organ systems, causing people to experience diabetic ketoacidosis (Diabetes).

Insulin doses must then be carefully calculated based on activity and stress levels, food intake, illness and additional factors. These calculations are rarely perfect, resulting in a tremendous emotional and mental burden for both patient and caregivers.

As Apio got older, her mother equipped her with enough skills to manage her diabetes on her own. “I have taught her to give herself insulin injections and how to test for blood sugar levels.

While I help her figure out how to do that, ultimately, I have made it clear that it is her body, and her life, so she has to be more responsible for it. My challenge as a parent has been learning to listen to what works for her, and helping her make that a reality,” Ayenyo relates.

Ayenyo has disclosed Apio’s condition to her teachers and classmates who remind her to treat herself and eat all meals at school.

The birth of SUTEDO
While frequenting Lacor hospital for medication after her daughter’s diagnosis in 2013, Ayenyo realised that she shared the same dilemma with so many mothers who queued with her at the Paediatric Unit. This gave her an idea.

“In addition to my daughter’s situation, the testimonies of these mothers about their diabetic children was another pain. I realised they knew nothing, messed up medication while others watched their children die silently of the condition, I thus started a local organsation with the hope of saving them,” she said.

At the beginning of 2015, Support the Diabetics Organisation (SUTEDO) was born, that has now created and enhanced a better understanding of diabetes among the populace in the region as well as empower ed them to manage the condition.

“I got medical professionals on board and we offer diabetes management and diagnostic tools to healthcare facilities and people living with diabetes,” she says.

She reveals her team is involved in continuous research to educate the masses on the prevention and management of diabetes and give hope to families of people living with diabetes.

According to Ayenyo, managing diabetes is a marathon, not a sprint. It is important to have someone outside the family to talk to. This ensures that diabetes does not take over all of the family’s time together. This can be a therapist or a child’s class teacher.

She noted that sometime it was hard enough to balance between caring for the daughter, family roles and her job as an administrator.

“I realised I had to find a way where I could have a happy family and a child who does not feel that her diabetes rules her life. This is easier said than done because I often found myself failing to manage her negative emotions when I got so busy,” she says.

The expenses involved in managing the condition themselves are immense.
“Each syringe to administer an insulin doze costs Shs2,000 and my daughter takes about eight injections a day. The insulin itself is very expensive,” Apiyo relates.

She adds that caregivers and patients fear stigma, so they hide the condition of their children.

“This is the fear we are fighting to remove from people’s minds in order to save the children. They have to know that diabetes is a special part of their child’s life and a part of who they are such that they do not need to feel embarrassed,” she stated.
She notes that if a child is straightforward and does not make a big deal of the diabetes or treat it like a secret, their friends will probably be okay with it too.
Every parent or caregiver of a diabetic child should ensure that he/she:
• Speaks to a diabetic child in a language that best fits his or her age while explaining to them about diabetes because a child or a teen responds to different levels of detail.
• Talks openly and honestly; encourage questions, let them know that it is not their fault. Explain to a child that they did not get diabetes because they are “bad” or did something wrong.
• Tells him or her in simple terms and explains that diabetes will not go away, like the flu or a cold does.
“Be straightforward and friendly and make sure that you let your child know that he or she can do the same things as other kids and teens without diabetes,” she advises.
•Show their friends or school staff their blood sugar monitor and insulin pen or pump.

T1D is a chronic, autoimmune condition that occurs when the body’s own immune system attacks the insulin-producing beta cells of the pancreas. This attack leaves the pancreas with little or no ability to produce insulin, a hormone that regulates blood sugar.


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