Living with type 1 diabetes – Matilda's story

At home in the brick house in Svedala, we are met by mother Ulrika, older sister Matilda, younger sister Clara and Cindy – the family's friendly golden retriever. We show up after school and before football practice, and are invited into an ordinary afternoon at the Widell family house. The reason we are visiting the family is to learn more about older sister Matilda's illness: type 1 diabetes. A chronic disease that affects 900 children and young people in Sweden every year, and many times comes as a total shock to both the person with the disease and their relatives.

WHAT IS TYPE 1 DIABETES AND WHO IS AFFECTED?

Insulin is a vital growth hormone that is produced in the body, and which is needed for the sugar (glucose) in the blood to enter the body's cells and provide them with energy. We cannot live without insulin.

In type 1 diabetes, the body's own immune system attacks the insulin-producing beta cells in the pancreas so that they can no longer produce insulin. This means that the sugar in the blood cannot be taken up by the cells and then the blood sugar level rises. Therefore, a person with type 1 diabetes must supply insulin manually, either by syringe or insulin pump, in order to survive. Since the manual delivery of insulin is not as accurate as the body's own insulin production, it is important to be observant too high or too low blood sugar levels. Too uneven levels can cause both acute and longer-term complications.

Today we do not know why some people get type 1 diabetes. The disease can affect anyone, at any time in life and cannot be prevented. Type 1 diabetes is a life-threatening and chronic disease for which there is no cure, and it requires insulin treatment and managing blood sugar levels around the clock. Through research, we know that heredity is a factor, but 90 percent of those who fall ill have no close relatives with the disease.

Such was the case for the Widell family.
– No one in our family has diabetes, we knew nothing about the disease at the beginning, says mother Ulrika. But now we are experts.

Matilda was diagnosed with type 1 diabetes when she was two years old. Today she is 11 and does not remember what it is like to not have diabetes.
– The disease is constantly present, but we as parents do everything we can to ensure that Matilda lives as normal a life as possible, says mother Ulrika. But it was tough in the beginning. It came as a big shock. One day you have a perfectly healthy child and the next you go to the hospital urgently. Words like "life-threatening" and "chronic" were frightening to hear.
Matilda had exhibited some of the most common symptoms for a period of time: she was unusually thirsty and needed to urinate excessively. At the children’s health center they took a blood test which showed that Matilda had a blood sugar level of 26, which should normally be between 4 and 6. The family immediately had to go to the children's emergency room in Malmö, where everything happened quickly: Matilda was given a drip and informed that a diabetes team would be called in. During an anxious and traumatic time, the parents received a serious intensive course in what diabetes means and learn how to use insulin syringes.
– My husband and I practiced using the technic on ourselves and each other. Then we let Matilda prick us before we pricked her. It was important for us to try to make this as playful as possible because she was too young to be able to reason with or explain to. Exposing your child to pain, administrating injections to a two-year-old is horrible. This little body.

Things were though, and there were no room for emotions and sadness because of everything that had to be dealt with right then and there. The family was worried for Matilda and what her future would be like, everything was new and scary, and the family's knowledge of diabetes was still very low. When Matilda was discharged from the hospital, it was time for a new phase where the family needed to take care of everything related to the disease themselves. An extra resource was needed at the preschool, a person that was trained by the family and who would be responsible for Matilda's diabetes during the day. It was stressful and worrying to leave her in someone else's hands, her blood sugar levels were very fluctuating when Matilda was little. It is difficult to plan insulin injections for young children, because the level of activity and rest affects the blood suger levels and not to mention the food – it is difficult to guess how fussy child will be with what they eat. All food and drink that Matilda ate would be carbohydrate counted in order to administer the correct amount of insulin. Small differences in carbohydrate intake can have a big impact on a small body.

Today, Matilda is not quite as sensitive to small changes, but they still count carbohydrates at home and in school.

EVERYDAY LIFE

Matilda and her little sister Clara sit at the kitchen table drawing, something they like to do in their spare time. Matilda draws a purple flower and while talking about school. The favorite subject is social studies and the most fun is learning about history. Little sister Clara has just started first grade and likes math. Seven years old, she knows nothing else than everyday life with a sister who has diabetes.

A normal day for Matilda starts with breakfast, where the carbohydrates must be counted. Insulin is given via her wireless pump attached to her arm.

She has a continuous blood glucose monitor (CGM) attached with a needle under the skin which sends the blood sugar levels to the parents' mobile phones, but when the technology isn’t working, it is a manual prick in the finger that’s needed. The insulin pump is changed every three days and glucose monitor every ten – both are relatively painful to change, says mother Ulrika.

At school, Matilda is received by a resource person who is responsible for her and another child who also has diabetes. During school hours, she receives help with everything related to her illness since it is complicated to both calculate carbohydrates and make the right decision regarding the treatment, something that is important because children are at risk of overdosing on insulin, which is life-threatening. When school is over, the responsibility passes to mother Ulrika who’s at work and constantly monitors Matilda's blood sugar levels so that she can call Matilda if she needs to take dextrose when her blood sugar is too low or insulin when it is too high.

In the garden the sisters are running around playing football. The ball flies over the fence to the neighbors. Matilda quickly jumps over and retrieves the ball again. The neighbors are used to it, mother Ulrika chuckles. Even with diabetes, Matilda is like any other 11-year-old, she practices football, loves to bake, jump on the trampoline with her friends and likes the horror movie Room 213. Physical activity is important given Matilda's diabetes, but the risk is that her blood sugar will drop. So, it is vital to eat beforehand and be careful with the insulin. Everything in a diabetic's life must be planned and you must always be one step ahead to keep your blood sugar as even as possible, says mother Ulrika.
– My husband and I still split the nights between us so that one of us is responsible for her diabetes every other night, otherwise we wouldn’t have been able to function due to lack of sleep. Matilda's blood sugar monitor usually warns several times during the night. Then the parents have to manually prick her fingers or toes to check her blood sugar levels and give either sugar or insulin.
– Thankfully, Matilda herself sleeps through it quite well, but our sleep has been totally ruined since the day she got sick. The disease never takes a break or vacation, planning and efforts are required all the time.

GLASSES

As a diabetic, you need to have regular fundus examinations, as high blood sugar over time can cause damage to vessels and nerves and lead to vision loss.

For Matilda, her need of glasses has no connection to her diabetes. She has had glasses since first grade and when it was time for new ones, she chose a pair from the YOUNG collection that she thought were nice and felt comfortable to wear. Like her older sister, Clara also wanted glasses and the eye examination revealed that she actually had a vision impairment. The eye doctor was a little surprised that Clara had been able to function without glasses up tp this point. So now Clara sees much better at school and is happy with her new glasses that she wears during the day. At least most of the time.
– Sometimes you have to take the glasses off when they get foggy, says Clara. And sometimes I forget to put them back on again.
The girls have each selected a pair of frames from the YOUNG collection. Matilda has chosen a pair of acetate frames in transparent brown that match her own colors perfectly. Little sister Clara has chosen a transparent pair in her favorite color pink.
– There were so many nice frames that it was difficult to choose, mother Ulrika smiles.

KNOWLEDGE AND VITAL TECHNOLOGY

Ulrika wishes that knowledge about diabetes in society would increase, which would mean that more people recognize the most common symptoms of low blood sugar, a condition that can lead to unconsciousness, convulsions, coma and even death.
– But the awareness at the health centers also needs to improve. If type 1 diabetes is detected earlier, more children would avoid ending up in the intensive care unit when they become ill. Testing a child for diabetes involves only a prick in the finger, a test for something that can quickly become a matter of life or death. High blood sugar can eventually lead to kidney damage, nerve damage, vision damage, amputation, cardiovascular disease, and other problems. We hope that Matilda and other children will avoid the severe sequelae that were common in the past.

To other parents with children affected by type 1 diabetes, Ulrika wants to say:
– It will be okay. For us it was very overwhelming and dramatic, but it gets better. Learning more about the disease makes one less afraid. And the technology that facilitates the control of blood sugar levels has really gotten better! Ulrika holds up her mobile phone where we can see a graph of Matilda's levels over time. There are many different factors that affect blood sugar, says mother Ulrika.
– We have learned that everything affects blood sugar levels. Food, temperature, exercise, infections, puberty, Matilda's mood - yes, everything! Type 1 diabetes never stabilizes, it's a 24/7 rollercoaster, but you learn to manage it as best you can.

TYPE 1 DIABETES FIRST AID

Signs of low blood sugar:
- Dizziness
- Confusion
- Irritation
- Trembling
- Heart palpitations
- Looking pale
- Hunger

If a person has type 1 diabetes, low blood sugar can get very serious quickly.
Here’s how to help:
1. Feed the person sugar – NEVER insulin!
2. If the person is unconscious – call your local emergency number

THANK YOU!

A BIG thank you to the Widell family for sharing their story!
Photographer: Charlotte Strömwall.

Facts about type 1 diabetes has been taken from Barndiabetesfonden's website.

Matilda is wearing model Y1213 c11 and Clara model Y1207 c38, both from the YOUNG collection together with lenses from HOYA Vision Care.