Living with type 1 diabetes: 'It makes life a little more complicated'

The incidence of type 1 diabetes is rising globally, especially in Ireland. Sharon Ní Chonchúir talks to a family that has learned to live with the condition.
Living with type 1 diabetes: 'It makes life a little more complicated'

The incidence of type 1 diabetes is rising globally, especially in Ireland. Sharon Ní Chonchúir talks to a family that has learned to live with the condition.

Life in the Would household in Croom, Co Limerick, differs a little from the norm. The family fridge is stocked with emergency energy drinks and back-up stores of insulin. Mealtimes see dad Richard, Aedín, 15, and Orran, 13, weighing food and carrying out mathematical calculations before they eat while mum Jenny and Callum, 10, tuck in regardless.

FAMILY CONCERN: The Would family from back, Richard, Callum, Jenny, Aedín and Orran.
FAMILY CONCERN: The Would family from back, Richard, Callum, Jenny, Aedín and Orran.

This is because Richard, his daughter and his son have type 1 diabetes. “It makes living a normal life a little more complicated,” says Orran.

Type 1 diabetes is an autoimmune condition caused by the body’s immune system destroying insulin-creating cells in the pancreas. A hormone, insulin helps the body to move glucose from the bloodstream into cells where it is needed for energy.

In healthy bodies, it automatically regulates blood glucose levels, no matter how much people eat or exercise. But this doesn’t happen in people with type 1 diabetes, so glucose builds up in their bloodstream.

“We don’t know the cause of type 1 diabetes, but we do know it’s not preventable,” says Dr Orla Neylon consultant paediatric endocrinologist with the University of Limerick Hospitals Group.

People appear to be born with a genetic vulnerability and are usually diagnosed with the condition in childhood or early adulthood.

The incidence of type 1 Ireland. “In 1997, our diagnosis rate was 16.3 in 100,000 children,” says Dr Neylon. “By 2008, this had increased to 27.5 per 100,000. It has stabilised since then, but Ireland is still in the top 25% worldwide from an incidence perspective, behind Finland, Sweden, the UK and Norway.”

According to the latest figures from Diabetes Ireland, there are 2,750 people under the age of 16 living with type 1 diabetes.

RAPID ONSET

The onset of the condition tends to be rapid, with blood glucose levels rising in a matter of weeks or months. This manifests in four common symptoms: frequent urination, excessive thirst, a lack of energy and rapid weight loss.

For the Would children, chronic thirst was the symptom that led to their diagnosis in August 2016. “Aedín was drinking a lot while we were on holidays, but we put it down to the heat,” says Jenny. “When it persisted after we got back, we got her checked out.”

Nine days later, Orran showed the same symptoms. “I was so thirsty I had to get up at night to have more water,” he says.

Would family; Aedin and Orran
Would family; Aedin and Orran

Type 1 diabetes requires life-long self-management of glucose monitoring, insulin injections, food intake and exercise.

“Even though we were familiar with diabetes because of Richard, it was still a huge learning curve,” says Jenny. “Richard is an adult who always managed his condition himself. As a parent, it was my responsibility to help my children.”

The children themselves were confused.

“All I remember is being exhausted and just sitting there while doctors and nurses told me things,” says Aedín.

The first thing they were told was how serious type 1 diabetes is. “It’s a life-threatening condition,” says Dr Neylon, who takes care of the Would children.

“Artificial insulin was invented in 1921. Before that, everyone who developed type 1 diabetes died within six months.”

The second thing they were told was how to manage the condition. Glucose monitoring was the starting point.

“In the past, this inevitably meant pricking your finger with a painful finger stick,” says Dr Neylon.

“Nowadays, blood glucose monitors are available. They keep constant track of blood sugar levels and feed that information into your phone.”

Aedín and Orran’s information is also fed to their parents’ phones. “We can check on them while they’re at school or playing sport,” says Jenny. Insulin must also be injected into the body throughout the day. There are three ways this can be done: a vial of insulin and a syringe, an insulin pen or an insulin pump.

Both Aedín and Orran use pumps. “These are pager-sized devices that you wear,” says Dr Neylon. “They hold a reservoir of insulin which is hooked up to an injection site that delivers insulin at pre-set rates every hour to match your body’s insulin demands.”

If that sounds simple, it’s not. You have to input your blood-sugar levels, enter the carbs you’re about to eat and then, based on pre-programmed ratios, the pump delivers insulin at the required rate.

DIET CONTROL

This is where diet comes in. “Contrary to popular opinion, it’s not all about sugar,” says Shirley Beattie, senior paediatric diabetes dietitian at Cork University Hospital. “It’s about getting the balance right between carbohydrate intake, blood sugar data and exercise.”

Counting carbohydrates is key to managing type 1 diabetes. Carbohydrates break down into glucose in the body, which means that the amount of carbohydrates you eat directly affects your blood glucose levels. This in turn affects the amount of insulin your body needs.

It’s all based on formulas, which is why Aedín and Orran weigh their food and carry out mathematical calculations before they eat.

“People with type 1 diabetes have to measure every gram of carbohydrate that passes their lips and adjust their insulin doses accordingly,” says Beattie.

Aedín and Orran have been doing this for years so they are used to it. They can still find it difficult though.

“Sometimes, I envy my friends,” says Aedín. “I see them eating without thinking while I have to sit there and work things out before I take a single bite of food.”

She and Orran understand how important it is to stick to their diabetes management plan. The consequences of not doing so are serious.

DANGER OF HYPOS

Hypoglycaemia (hypo) occurs when blood glucose levels drop too low. The extent of the drop determines the extent of the hypo.

Symptoms range from hunger, shaking and sweating to confusion, slurred speech, unconsciousness and seizure. Most hypos can be remedied by consuming carbohydrates (hence the energy drinks in the fridge), but more severe ones require hospitalisation.

So far, Aedín and Orran’s experience of hypos has been mild. “I’ve got dizzy and disorientated,” says Aedín.

“I felt weak and couldn’t think properly.”

Diabetic ketoacidosis is another concern. This occurs when there is not enough insulin in the body to provide glucose for energy.

The body reacts by breaking down body fat, creating a by-product called ketones. A build-up of ketones can cause the blood to become acidic, leading to breathing problems, abdominal pain and vomiting. This can usually be treated with extra insulin and plenty of fluids. However, if untreated, it can be fatal.

Those are the short-term complications. Long-term ones include heart attacks, strokes, kidney problems, blindness, problems with the nerve endings in the fingers, toes and gut and early death.

“There’s so much to worry about that worry has become part of our everyday lives,” says Richard.

However, the family is hopeful too. Orran hopes people with type 1 diabetes will soon be able to wear an artificial pancreas.

This isn’t as far-fetched as it sounds. “We’ve got continuous insulin pumps and glucose monitors,” says Dr Neylon. “It’s just a question of integrating them and billions are being spent to make it [an artificial pancreas] a reality.”

It is possible to live a happy and healthy life following a diagnosis of type 1 diabetes? “Just look at the famous sportspeople out there with the condition,” says Dr Neylon.

“There’s former Dublin footballer Kevin Nolan, UK Olympic rower Steve Redgrave and cyclist Stephen Clancy. Living with type 1 diabetes is a challenge but it doesn’t have to hold you back. That’s exemplified by thousands of Irish families every day.”

Diabetes pump
Diabetes pump

CORONAVIRUS CONCERNS

The Covid-19 pandemic is causing concern for medical professionals who specialise in childhood diabetes. They are worried parents may delay going to the doctor if their child is showing symptoms of diabetes. This means they may not get a prompt diagnosis and their child’s health may suffer as a result.

“It’s a huge concern at the moment,” says Dr Anna Clarke, research and advocacy manager with Diabetes Ireland. “If a child is losing weight, feeling tired, is urinating a lot or drinking excessively, don’t put off going to the doctor. Don’t let the pandemic interfere with getting a prompt diagnosis.”

This has already happened in Italy and China. According to the International Society for Paediatric and Adolescent Diabetes, both countries are reporting an increase in diabetic ketoacidosis in young people secondary to delayed presentation for diagnosis.

“Diabetic ketoacidosis is a potentially fatal condition that warrants emergency treatment,” says Clarke.

Many children develop respiratory problems as a symptom of diabetic ketoacidosis and in the current medical climate, the worry is that this could be mistaken for Covid-19 and the situation could escalate until it becomes extremely serious.

Dr Neylon shares Clarke’s concerns. “We all know that GPs are overburdened at the moment and it’s understandable that many parents would be afraid to bring their children to hospital but if your child displays any of the common symptoms of type 1 diabetes — increased urination, excessive thirst, tiredness and weight loss — bring them to the doctor immediately,” she says.

“Doctors such as diabetes specialist Francesco Chairelli in Italy have warned about what’s happened there, and we don’t want to see the situation replicated in Ireland.”

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