Stories/ Lived Experience
Authors: Layla May and Deirdre Forde, ALL Institute, Maynooth University
This story was written by Layla May and supported by Deirdre Forde, who is a member of the ALL Institute, Maynooth University.
The lived experience piece authored by little Layla May aims to mark the World Diabetes Day, which is celebrated on 14th November every year. It also aims to raise awareness about children with diabetes and their experience.
What is Type 1 Diabetes?
Diabetes mellitus Type 1 (T1DM) is a chronic autoimmune condition in which the pancreas stops making the hormone insulin. Insulin helps control blood glucose levels and allows glucose (from carbohydrate in the diet) to move from the blood into body cells for energy. The brain uses glucose as fuel so low blood glucose levels are dangerous in the short term and if not recognised and treated can result in collapse and seizure. High blood sugars can lead to other complications for someone with diabetes.
Ireland is an area of high T1DM prevalence (Roche et al. 2014). In 2014, figures from the Irish Childhood Diabetes Register report that there were 1300 Irish children aged between 4-13 years with T1DM and of these approximately 275 (20%) were aged between 4-8 years and 1081 (80%) were aged between 8-13 years. Optimal diabetes control using intensive insulin therapy is critical to prevention of short and long term diabetes related complications, but has also other important benefits for children (Desrocher & Rovet 2004).
How is Type 1 Diabetes managed everyday?
Optimal care of Type 1 Diabetes is onerous and must be managed 24 hours a day, 7 days a week. The goal of effective diabetes management is to maintain blood glucose levels within a target range which is individualised but is generally between 4-8 mmol/L. Effective diabetes management requires careful balance between carbohydrate intake in food (raises blood glucose levels) and physical activity (generally lowers blood glucose levels) and insulin administration (lowers blood glucose levels) to prevent low or high blood glucose levels. Intensive insulin therapy is defined as either a multiple daily injection regimen (generally 4 or more injections per day) or insulin pump therapy (continuous insulin infusion).
Therefore, a person with diabetes must monitor their blood glucose levels every day and night. Young children with diabetes need the help of their parents at home and an Inclusion Support Assistant at school to manage their blood glucose levels.
Blood Glucose Levels can be checked with an individual hand-held blood glucose meter or glucometer. There are many different varieties and they all work in a very similar way. They can also be checked via Continuous glucose monitors (CGM): these are devices attached to a child. They give a continuous reading of tissue glucose. These readings are often displayed on the device or transmitted to a mobile phone. These devices have trend arrows which indicate if glucose level is rising or falling.
The blood glucose levels are displayed on a screen with general agreement that a level of:
Less than 4.0 mmol/l = Low blood glucose level (Hypoglycaemia). Requires urgent attention: generally the consumption of sugar such as a fizzy drink.
Between 4.0 – 8.0 mmol/l = Blood glucose level in target
More than 11.1 mmol = High blood glucose levels (Hyperglycaemia)
More than 14.0 mmol/l = Very high blood glucose levels (Hyperglycaemia); indicates need for blood ketone check and may require additional action.
Dr. Deirdre Forde
Layla May – Me and My Diabetes
My name is Layla May and I am nine years old. I am in 4th class and I live at home with my mammy and daddy, my brother, Hugh, and my little sister, Freya. Hugh is eight and Freya is five. Of course, I cannot do this blog without mentioning the love of my life, my white Maltese dog called Lulu. There are lots of things I would like to tell you about me.
- I love dogs
- I like to go horse riding
- I play GAA
- I enjoy playing the piano, especially the song “Confident” by Demi Lovato.
- I love to read books and write stories
- Last, but not least, I have Type 1 diabetes.
For those of you who don’t know what diabetes is, I will tell you all about it.
I got diabetes when I was 6 years old. Before I knew I had it, I was going to the toilet a lot. I felt very tired and I was very thirsty. I was calling my mammy in the middle of the night to get me a drink of water. When my Auntie Sharon came on a surprise visit, my mammy asked her to check my blood sugar level (my Auntie is a diabetic too). At the time I did not know what they were doing. I do remember there was a long silence in our kitchen after my Auntie said the reading was 29.7. That meant nothing to me back then! My mammy, my Auntie, and I went straight to the hospital. I stayed in the children’s ward for one full week. The nurses were really nice. I got lots of presents and my Mammy and Daddy learned all about diabetes.
I am using this graph to show you how I have felt the the last couple of years with diabetes. At the start, I didn’t mind having diabetes that much. I enjoyed teaching the class about diabetes. I brought my diabetic teddy called Rufus into school and explained why he needs injections all of the time. My teacher showed the class a video about diabetes as well. I think this helped all of my friends to understand my condition more and they weren’t always asking questions after that or whispering when they saw the teacher taking my injection out of the drawer. However, I don’t think I was happy about my diabetes when I was 7. I realised it wasn’t going away. I was tired of injecting myself every time I wanted to eat and I didn’t like being woken in the middle of the night when I went high (My Mammy and Daddy come in to check me every night). Sometimes in school, I couldn’t go out and play with my friends during yard time, if I was low. However, after my seventh birthday, my little sister was diagnosed when she was 2 years old. I felt really sad and upset for her but I was also relieved that I wasn’t the only one and we had each other. I remember playing doctors and nurses in the hospital with her when she was hooked up to lots of machines. I knew I would be able to help her and I did. But she has helped me too. Some days when it all gets too much, she will come over and give me a big hug. I give her hugs all the time when mammy and daddy need to give her an injection. We have each other and we always will.
Since I turned eight, the technology has been getting better and better and it has made my life easier (or our lives easier). I switched to an insulin pump which means I only have to inject if it ever breaks down. It’s a bit bulky to wear but it beats injections. Plus, I have gotten used to wearing it now. The other great thing is I don’t have to finger prick as much because I wear a continuous glucose monitoring sensor which sends a reading of my bloods to…wait for it… my phone! I have had to get a phone which is the second-best thing that has happened because of diabetes. The first was the pump. My mammy and daddy call the phone a Dexacom to try and pretend it’s not an i-phone. I’m not allowed to use it as a phone but I can listen to music on Spotify using my headphones which is great.
The way I look at my diabetes is ( I am coeliac too, but I will leave that for another day) ok, as my mammy says, I’ve had hurdles to jump over. If I don’t jump over I could get stuck. I don’t want to get stuck. Things that have helped me not to get stuck is to remember, I am lucky that the doctors know how to treat diabetes, I am lucky technology keeps getting better, I am lucky I was born in Ireland where I can get the medicine I need and I am lucky my teachers got training to help me manage my diabetes. I have jumped over lots of hurdles and I will keep jumping over them. Mammy and Daddy help me and Freya jump over them all the time. I am so lucky to have them too.