I want to increase knowledge and change the image of a disease about which there is enormous ignorance
In November 2015, our daughter Lisen, then 8 years old, fell ill with type 1 diabetes. It was on Halloween that it became apparent to us. We were with close friends and celebrated. The children were dressed up, happy and excited for the evening’s prank or candy walk in the neighborhood. But Lisen came back after only a short while. She felt tired, looked saggy and pale. While the other children filled their baskets with sweets in the neighborhood, Lisen sat sleepily in my lap, bucketed soda and ran to the toilet.
My husband and I immediately understood what had happened. Lisen’s father Svante, who also has type 1 diabetes, measured Lisen’s blood sugar the next morning. Shortly afterwards we packed Lisen’s bag and Lisen and Svante went to Astrid Lindgren’s children’s hospital. We understood that Lisen would not come home in a few days. I was left alone at home with Lisen’s two years younger siblings. Worried, sad and confused.
I had then lived with Svante for over 20 years, so I thought I had a lot of knowledge about type 1 diabetes. Unlike many other families affected by the disease, I was not shocked. We have always known that there is a certain risk with heredity. Of course, it was a great sadness and I immediately understood that this will affect the License and the whole family’s life in the future. But just then I felt most that we are doing this, it will go well, we are already a type 1 diabetes family, it can not be such a big difference.
But, we had never understood what change this would mean for us as a family and of course most for Lisen. It took a few months before I realized it, before it landed. Then everything fell on me. The grief, the questions, the brooding. Why did it affect us, if we could have done something different, how will Lisen handle this as a child, as a teenager, as an adult? How will we, our family, handle this? Because that’s it. It is a disease that affects the whole family.
Parents who get a new dimension of worry about their children, who need to get up and measure blood sugar at night, parents who need to be able to have a dialogue with the Swedish Social Insurance Agency, need to fight for the right support at school. Siblings who feel neglected and who may have difficulty coping with grief over their sibling’s illness. It’s hard to understand.
Many people usually say that it will take a year. First Christmas with diabetes, first Easter, first summer… And I agree. It took a year for the disease to land in our family. Find routines. Find a way to talk. Find a way to make it a natural part of our family and our everyday lives.
As a wife and mother, it feels very important to spread knowledge and information about the disease. Sweden is the worst affected in the world (second only to Finland) with the most people with type 1 diabetes measured per inhabitant. It is the most common life-threatening and incurable disease that affects children and young people in Sweden. No one knows why. No one is cured. Despite this, knowledge about the disease is very low and many children are faced with prejudices, especially linked to food. The cause of type 1 diabetes is unknown and research has not found a link between eating habits, lifestyle and the onset of the disease. Diet, on the other hand, is an important part of the treatment.
Because of this, I decided to write a book. I wanted to give the victims a version of living with the disease, but in an inspiring and motivating way. Wanted to share with me my experiences, tips and advice – to everyone living with and around type 1 diabetes. The result – Helper for type 1 diabetes – landed in the bookstore in 2017 but was also distributed free (and still does) to newly diagnosed children and families, at Karolinska University Hospital’s pediatric diabetes clinics. I wrote the book in collaboration with doctors and dietitians at Astrid Lindgren’s childhood diabetes activities. Many other children and families with type 1 diabetes also shared their experiences of the disease. The book has become an important help for many parents, relatives and friends of children with type 1 diabetes.
Spreading knowledge and inspiring about food is what I am extra passionate about. There are so many myths about what people with type 1 diabetes should eat, or that they get the disease from improper diet like too much sugar. Type 1 diabetes is an autoimmune disease and there is nothing you can do to prevent the disease. It is important to understand that it is an insulin deficiency disease and children with type 1 diabetes have the same need for energy and nutrients from food as other children and adolescents in order to grow and develop normally.
In order to increase knowledge about the disease, spread knowledge and dispel many of the prevailing myths, I decided to take a leave of absence for just over a year to run an educational initiative for the Child Diabetes Foundation. With support from the ICA Foundation, I developed “Heavenly good, heavenly good” – an initiative to teach children and young people to understand the connections between diet and health. The educational initiative includes the fact-packed cookbook Heavenly good, heavenly good, which provides an introduction and understanding of food, body, meals and health. The book with accompanying teaching materials will make it easy and fun for children and students to learn more about type 1 diabetes while it will inspire all children and young people to eat better. Eating well is equally important for everyone and the food that is good for people with type 1 diabetes is exactly the same food that is good for everyone. It is the food that is described in the National Food Administration’s guidelines and the Nordic nutritional recommendations (NNR2012) with the plate model as a good starting point. So no special diet is recommended *.
As guest writers for Food Pharmacy, Victoria Nordström and I, chef / food stylist, and I want to inspire children, young people and parents. We will write about why it is important to eat food and move around to feel good. About what the food contains, what happens to the food in the body and why the body needs different kinds of food to function. Victoria will offer lots of tasty recipes – breakfast, sweets, and snacks, coffee and easy dinners and other tips and tricks to create healthy eating habits at home. Of course, I will also write more about type 1 diabetes to increase knowledge about and change the image of a disease about which there is so much ignorance. With this, I hope to help all those living with and around the disease.
See you later!
My books, and the texts I will write for Food Pharmacy, are always based on the National Food Administration’s recommendations and the Nordic nutritional recommendations (NNR2012), which are the result of more than 100 Nordic dietitians reviewing all scientific studies after 2000. Differences in dietary recommendations can of course differ between individuals, different ages and especially between type 1 and type 2 diabetes. The Child Diabetes Foundation’s (and my) focus is the research recommendations for children with type 1 diabetes.
Do you want to learn more about type 1 diabetes and contribute to vital research? Read more at www.barndiabetesfonden.se
Do you want to buy the book Heavenly good, heavenly good? Together with Food Pharmacy, Tukan publishing house offers you a 20% discount on the book with the code: heavenly good
This is a guest post. Any opinions expressed are the writer’s own.
We wish to thank the writer of this post for this remarkable content
I want to increase knowledge and change the image of a disease about which there is enormous ignorance – Food Pharmacy