Alara Amin was 4 years old when she was diagnosed with type 1 diabetes. In the five years since, she has become actively involved in managing her condition, which is also a family and school affair. Even her 4-year-old brother understands that she must have insulin injections three times a day. 

“I have diabetes, but that’s fine,” says Alara, now 9 years old and living in Nairobi. “I monitor my blood sugar every day, have my insulin medicine, and I am also keen to ensure that I have a healthy diet.” She loves her chicken with spaghetti and fresh orange juice but is careful not to indulge in fizzy drinks and sugary treats. When she was first diagnosed, she carried her meals to school. Her parents eventually consulted with the school management, who now provide appropriate meals for her.

Her mother, Suzan Mohamed, underscores how diabetes management requires physical and psychological back-up from the family and beyond. “The teachers are all aware that she is living with diabetes, and they are very supportive whenever she isn’t feeling well,” she explains.

Alara’s father, Nazar Amin, says that when his daughter was diagnosed with diabetes, it marked the beginning of a journey: “We sat down as a family and learned about diabetes and decided to make its management smooth and stress-free for our little girl. We wanted her to fully enjoy her childhood.”

Family and school involvement, emphasize many people living with diabetes, makes all the difference, which may be why the theme for this month’s World Diabetes Day is “The Family and Diabetes”.

“Families should offer social support by encouraging [a person with diabetes] to adhere to medication, encouraging them to be consistent with follow-up visits and observing a healthy lifestyle, including consumption of healthy diets and physical activity,” says Dr Muthoni Gichu, the head of the Division of Geriatrics Medicine at the Ministry of Health in Kenya.

Diabetes is a chronic disease that occurs either when the pancreas does not produce enough insulin, which regulates blood sugar, or when the body cannot use the insulin it produces. Type 1 diabetes is a deficient insulin production and requires daily administration of insulin; type 2 is due to the body’s ineffective use of insulin. Gestational diabetes is a temporary condition that occurs in pregnancy and carries long-term risk of type 2 diabetes.

According to the World Health Organization (WHO), diabetes is a major cause of blindness, kidney failure, heart attacks, stroke and lower limb amputations. WHO data indicate its prevalence has been rising more rapidly in middle- and low-income countries. Prevalence in Kenya is 3.3%, according to the 2015 STEPwise survey for noncommunicable diseases.

To reverse the rising trend, WHO Kenya is working with the Ministry of Health and partners by offering technical support to develop norms and standards for policy on diabetes diagnosis and care and to build awareness on diabetes.

“Diabetes is controllable, not curable,” says Dr Joyce Nato, the WHO Kenya expert for noncommunicable diseases, adding that children should be encouraged to join physical activities at home and in school.

Dr Gichu stresses that low awareness levels result in delayed diagnosis, poor health-seeking behaviours, an inadequately trained health care workforce and inconsistency in the availability of drugs and supplies to treat and manage diabetes. Inadequate patient education can lead to poorly controlled sugars and thus complications.

“We need to raise awareness among the population on the importance of screening, strengthen patient education to promote better health outcomes, strengthen research to inform practice and policy and to build health providers capacity to respond to the growing numbers of people with diabetes in need of services,” says Dr Gichu.

Most Kenyans living with diabetes, she adds, have type 2, which is largely preventable through regular physical activity and a healthy diet.

Dr Gichu also points out that better diabetes management would occur if there was better access to quality health care, integration into HIV and tuberculosis programmes and supportive public-private partnerships. “We also need to urgently address risk factors, such as physical inactivity, unhealthy diets, tobacco use, harmful consumption of alcohol, overweight and obesity, increasing age and family history,” she adds.

How family and school awareness made a difference

John Okoth is where he is today because of family and school responses. When he was 16, he ignored the symptoms – the fatigue and frequent thirst and urination. But when he significantly lost weight, his teachers at his boarding school sent him home for urgent medical tests. 

The test results were surprising. 

“I was diagnosed with diabetes type 1. As a teenager, this shocked me because I always associated diabetes with adults, especially those in their 50s. I accepted and made a personal vow to manage diabetes well and live a young productive life,” says Okoth, now a fourth-year medical student at the University of Nairobi who exercises daily, watches his diet and takes his insulin shots three times a day.

He also appreciates how his mother and three siblings support his treatment. “We check our plates to ensure we eat healthy meals, keep fit by staying active through walking and manage our stress levels,” says his mother, Monica Atieno. She recalls how the cost of treatment was initially a challenge, with the average monthly medical expenditure at US$50 (his university health insurance now covers the insulin and other treatment costs).

Okoth’s urge to manage diabetes better does not stop with his personal regimen. He is intent on pursuing a specialized course in endocrinology to understand hormone-related diseases, diabetes included. Okoth is comfortable with his condition and openly discusses diabetes when people ask about it. 

“I speak to the young people and urge them to keep their eyes focused on the goal. Living with diabetes doesn’t mean I had to shy away from realizing my dream to become a doctor,” he says. He is also part of a youth health advocacy programme at the Kenya Diabetes Management and Information Centre, a medical charity that promotes public awareness for the prevention, diagnosis and management of diabetes.