Controlling the monster
Can children with diabetes live happy and normal lives? Dena Rashed
reports on a new programme which aims at achieving just that
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Kids on the roller coaster of diabetes can live normal lives with proper education and support (photo: Sherif Sonbol)
When you think of a diabetic child, the image that comes to mind is that of a child who is always dizzy and fatigued. But for three years now, the Assistance to Young Diabetics (AYD) society has been working to help diabetic children overcome such symptoms and lead a comfortable life.
Twelve-year-old Israa Khaled is one of the 600 children whom, together with their families, AYD has educated about their conditions. "With the help of AYD and my mother I learned how to control my diabetes," said Khaled. "This is what makes a diabetic child happy!"
In a country with approximately seven million diabetics, of which an estimated 150,000 are youngsters, helping children take control of the disease has become a top public health concern. "For AYD, the aim is to educate diabetic kids and their parents about their condition and help them lead a normal healthy life," said Sahar Ismail, a physician at AYD, who is also Khaled's mother.
The idea behind AYD's educational programme, explained Ismail, came from the French society Aide aux Jeunes Diabétiques (AJD). "Laila El-Sioufi, the president of AYD took the initiative and contacted the AJD, which has been doing great work in diabetes education for the past 50 years. With the help of a dedicated team, she Arabised their material and the illustrations so as to suit the culture of our children."
AJD has produced a series of 12 colourful and simple booklets which explain everything they need to know to the child and their family. The booklets cover the basics of treatment, and how to put this into practice; how to deal with emergency cases of low and high sugar levels; the essentials of nutrition for diabetic children; and, most importantly, life after diagnosis, and how families should follow up the condition of their kids.
"We are now introducing the last booklet that deals with school and the diabetic child," said Sahar Abul-Leil, pediatrician at the AYD. "Teachers also need to be aware of what diabetes means for children.."
Under the AYD educational programme, five different kinds of expert are available to help the child come to terms with diabetes. "A child has an educator on diabetes, a physician, a dietician, a social worker and a psychiatrist to help them solve any problem they face," said Ismail. A key aim of the programme is to ensure that the children do not feel they are alone. To this end, a number of activities are laid on, such as camping trips, and sports at Al-Gezira Youth Centre. "The one-day camp helps them to rely on themselves and learn how to control their diabetes whatever the conditions," Ismail added.
Many of the doctors who volunteer at AYD are also parents of diabetic children. "It is comforting for us to know they feel what we feel," said Nagwa Fawzi, mother of 13-year- old diabetic Amani. "My daughter became a diabetic suddenly eight months ago. Back then I knew nothing about diabetes, and when I started her treatment at the hospital they advised me to go to AYD," said Fawzi. She has been attending the lectures for the past weeks, and when interviewed she had just finished solving a test with two other girls who attend the lectures. For Fawzi, who comes from Basateen, a low-income district, it was important to feel that the doctors are unimposing people who go out of their way to find time to help her and her child. "Here, the people are helpful, and they provide me and my child with the care I want," she added.
Although the programme covers all the different dimensions of diabetes, the most important factor according to those involved is positive thinking and family support. Abdallah, a 17-year-old diabetic, has been lacking both of these, even though he has been ill since he was an infant. "He has had several health complications due to diabetes. It affected his kidneys and liver, and he has suffered many other problems," said Maha Sami, 21, his sister, who took the lectures in order to understand how to help her brother. "In the past he did not follow a diet. He would eat what he wanted and then suffer the consequences," she said. "Be careful when you talk to him," she went on to warn. "He hates talking about being a diabetic."
But Abdallah explained that he has simply lost hope. That's what makes him uncomfortable when talking about his diabetes. "I ate a pie today for breakfast, and I know I was not supposed to eat it, but I got bored," he said, wearily. "I try to control my diabetes, but then I get bored. I've tried a lot."
Ismail says there is hope for Abdallah. "He is here with us, and that means we are going to help him through."
Abdallah is one of society's more challenging cases. "He wants to live and act normal, and at the same time his family are tired of coping with his diabetes. That is one of the strongest set backs which a child may face," she explained.
"If the family wants to help its diabetic child, they all need to eat properly, both for their health and for their child," explained Shaimaa Yassin, a dietician at AYD. Her colleague Ashraf Mohamed added, "It is difficult for a six-year-old child to see all his family eating food which he has to learn to control, and expect him not to follow their example. So we basically aim at educating the family too on healthy food."
Other children do not wish even to acknowledge they are diabetic. "They get bored with the tests, or they hate to say they are diabetic since kids at school may think it is contagious, and that has a big impact on their morale," said Walaa Mohamed, a psychiatrist at AYD.
"Together with the social workers, we help them realise that it is not a disease," said psychiatrist Shaimaa Essam. "They are normal healthy kids, and with education on how to control their diabetes, they are no different from any other kids."