A diagnosis for the whole family: living with someone with diabetes
Posted on 31 October 2019
If you’ve had a child diagnosed with diabetes, you’ll know: this is a life-changing illness, and not just for them. Here we look at how living with someone with diabetes affects the whole family and what you can do to help a loved one manage the condition.
We all need insulin to survive. This essential hormone is produced by the pancreas to help regulate the metabolism of carbohydrates, fats and proteins into energy. Without insulin to enable this process, these sources of fuel would flood the system in the form of blood glucose, wreaking havoc all throughout the body.
Type 1 diabetes is an autoimmune condition in which the body attacks itself. The immune system targets insulin-producing beta cells in the pancreas, causing a chronic inability to produce insulin.
“There is no diagnosis as sudden or life-changing as Type 1 diabetes,” says Dr David Segal, a paediatric endocrinologist and diabetic specialist at Mediclinic’s Wits Donald Gordon Medical Centre. “Cancer is an equally devastating diagnosis – but it can take months to know for sure. There are early warning signs, risk factors, tests, confirmations. In that time, you can perhaps steadily come to terms with it. With Type 1 diabetes, there is no time. We know within a second.”
Although Type 1 diabetes can occur at any age, the majority of Type 1 diabetics are diagnosed as young children. This means for the first few years after diagnosis, much of the treatment steps and protocols must be facilitated and managed by the patient’s parents, says Dr Segal.
“This is a rough estimate, but about one in 500 people will have Type 1 diabetes,” he says. “It’s a life-changing diagnosis. All we need is a finger-prick blood test, a few questions – are you drinking a lot and urinating often – and just like that, you’re diagnosed with a condition you never knew existed. Your world is changed forever.”
For parents of a child with Type 1 diabetes, treatment and care is an ongoing, everyday process. Whereas Type 2 diabetics will need to undergo various lifestyle changes, from eating a healthier diet to adopting a new exercise regimen, Type 1 diabetes has an all-encompassing effect on everyday life.
A child with Type 1 diabetes will need to have their blood sugar tested up to ten times a day – before meals, at school and even during the night. They will also require frequent, painful insulin injections to guard against hypoglycemia, or low blood sugar, which could, if missed and left untreated, leave them in a life-threatening diabetic coma.
“Type 1 diabetes is not a condition that can be managed in a hospital, or by a team of nurses. All of that falls on the parents,” Dr Segal explains. “They’re the ones who need to learn how to take blood tests, administer insulin, prepare healthy meals. And they have to learn all of this incredibly quickly.”
Parents play a vital role in helping newly diagnosed children come to terms with their ‘new normal’. But for these parents, acclimatising can be a challenge. “That first consultation is key. We have an hour or two to revolutionise how they see their world – and to really help them understand, this is serious, but we can help.”
Dr Segal says Type 1 diabetes is a life-long disease, and the whole family of the person affected needs to recognise and help to manage the effects of that. “If you don’t manage Type 1 diabetes, it will kill you. So your mindset needs to shift quite dramatically right up front: you need to say, I am willing to manage it. Parents, grandparents, siblings, everybody – the whole family needs to adopt a positive attitude of, we will do what it takes.”
Mediclinic’s Wits Donald Gordon Medical Centre is equipped with a multidisciplinary team of endocrinology experts, experienced in providing quality care in a variety of specialisms. It is this variety in approach that helps parents of Type 1 diabetic children adapt, Dr Segal says: “These parents need to be able to walk into a space where they feel supported. We have doctors and nurses, and we play a role as educators and psychologists. We are wearing multiple hats at one time, in every consult. We are here to help.”