Living with type 1 diabetes

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When you become a parent, you also inherit a lifelong worry for your child. Are they meeting their milestones? Will they make friends at school? Are they having too much screen-time? What about if they learn to drive – will they be safe? Parental instinct is to want to hold your child close and protect them forever. 

However, if your child has type 1 diabetes, those feelings are ramped up by additional challenges and the fear that just five minutes could be crucial for your child’s safety and wellbeing. But 13-year-old Darcey Wheater lives beyond those fears and won’t let diabetes stand in the way of her life.

To raise awareness of the condition, Darcey and her mum Jill, from Rotherham, share what life is like for diabetic children and their families. 

Darcey was diagnosed with diabetes just before her eighth birthday which came as a bit of a shock for her parents. There was no family history of the condition, neither did they know much about it. But Jill had noticed concerning changes in her daughter and knew something wasn’t quite right. 

“The symptoms of type 1 diabetes are the four Ts: toilet, thirsty, tired and thinner. Darcey had all of them. She lost a lot of weight and could guzzle ice cold water like nobody’s business. We were going through some family bereavements at the time so initially I wondered if that was why she was being irritable – maybe even hormones,” Jill says. 

Their family GP requested a urine sample to rule out any health concerns and, if clear, was recommending grief counselling. A few hours after handing the sample in, Darcey was admitted to Rotherham Hospital’s children’s ward for urgent diabetic treatment.  

Naturally, parents of children diagnosed with type 1 diabetes begin to question whether any factors are to blame, such as lifestyle or genetics. But, as doctors reassured Jill and her husband, you can’t predict who will develop type 1 diabetes and you certainly can’t prevent it.  

It’s an auto-immune disorder whereby the body attacks the cells in the pancreas which make insulin; the hormone which regulates blood sugar levels. It is a serious and lifelong condition for which there is no cure or reversal; around eight percent of people with diabetes have type 1. 

The majority of people with type 1 diabetes will be diagnosed in childhood. But common colds, growth spurts, hormones – and adrenaline from adolescent emotions – means diabetes management through childhood needs constant adaptation and adjustment. The highs and lows are both real and metaphorical. 

For parents of younger children, they take on the imperative task of planning and organising the day ahead to manage their child’s condition and keep them safe. Any carbs that are eaten must be counted (or guesstimated) and exercise has to be factored in to adjust the amount of insulin needed each day accordingly. It’s like a technical science that can be difficult to fathom for most people looking in. 

Darcey and mum Jill

Yes, it becomes a way of life but the Wheaters never wanted diabetes to control family life or define Darcey as a person. They wanted to make life as normal as possible for their daughter and clear up any misconceptions about diabetes along the way.  

“Ever since we got the diagnosis, the local health service has been amazing. The paediatricians and diabetes nurses at Rotherham were so encouraging and answered as many questions as we had, particularly in the early days. 

“They were always very keen for us to let Darcey be a child. We never changed her diet because what child doesn’t enjoy pizza and cake. We say yes to most activities Darcey wants to try and she loves swimming, playing netball, going to her local Guides group and on trips with school.” 

In the five years since Darcey’s diagnosis, technology has changed so much. Having initially had insulin injection various times a day, Darcey now has a tubeless pump which regulates her insulin levels throughout the day. Along with the pump, Darcey has a small CGM (Continuous Glucose Monitor) device fitted under her skin which constantly records her glucose levels and sends reports to a handheld device which alerts them to high or low levels.  

“I still have sleepless nights where Darcey’s monitor alarm goes off and we panic that her levels are too high or too low, but we know how to quickly balance those out now. The technology we’ve been fortunate to receive gives her more flexibility and freedom. She’s a teenage girl so at that age where she wants to blend in with her friends. It just means she’s not worrying about rushing off to the school’s medical room to dose insulin before lunch. It’s so discreet that even her teachers forget she has diabetes sometimes.” 

With type 2 diabetes seeming to dominate the headlines, the information available publicly for type 1 diabetes can often go under the radar. Confusion over the difference between the two also hinders the public’s perception of people with type 1 diabetes.  

But save for a few passing comments that it’s because she’s eaten too many sweets, Darcey and her family are fortunate not to have experienced unhelpful or thoughtless attitudes. Her maturity means she’s also able to talk about her condition very honestly and help people understand how normal life can be. 

“Because we were teaching her to be independent and responsible for her condition, I was worried that she’d lose her childhood and have to grow up quickly. But she just amazes me. She’s sensible and calm but also funny and friendly. She takes everything in her stride and just gets on with things without worrying or fretting. 

“When she was first diagnosed, Darcey wanted to be a scientist to find a cure for diabetes. She is still very ambitious and would like to go to university to study architecture, and in a few years that may become reality. So, it’s important she knows how to manage her diabetes.” 

More information and support for children with type 1 diabetes can be found here: www.jdrf.org.uk or www.digibete.org

About Type 1 Diabetes 

Type 1 diabetes causes the level of glucose (sugar) in your blood to become too high. This happens because your body cannot produce enough of a hormone called insulin, which controls blood glucose. It is a life-long condition and needs daily insulin injections to keep glucose levels under control. 

Type 1 diabetes is not linked with age or being overweight. 

Symptoms of type 1 diabetes include: 

  • Feeling very thirsty 
  • Urinating more than usual, particularly at night 
  • Feeling very tired 
  • Losing weight without trying 
  • Thrush that keeps coming back 
  • Blurred vision 
  • Cuts and grazes that are not healing 

Type 1 diabetes symptoms can come on quickly, particularly in children. See your GP if you have any symptoms or concerns. 

People with type 1 diabetes must manage their condition in order to prevent their blood sugar levels being too high or low. These are called Hyperglycaemia (too high) and Hypoglycaemia (too low). 

Hypos come on fast and can happen if meals are delayed or didn’t include enough carbohydrates, lots of exercise is done without having the right amount of carbs/insulin dose, or alcohol is drunk on an empty stomach. Treatment includes eating or drinking something sugary such as small sweets or a glass of non-diet soda or fruit juice. 

The most common signs of diabetes are: 

  • Sweating 
  • Being anxious or irritable 
  • Feeling hungry 
  • Difficulty concentrating 
  • Blurred sight 
  • Trembling and feeling shaky 

Very high blood sugar levels are dangerous and can lead to diabetic ketoacidosis (DKA) which can be life-threatening. 

This can happen if you’re stressed, unwell, less active or don’t have enough insulin for the amount of carbs eaten. Infections and drinking too much alcohol are common triggers for DKA.