Real life experiences
28th of october 2021 by Eveliina Karlson
“If I develop type 1 diabetes at some point, I will be beyond grateful to the INNODIA study for screening me in advance, catching the disease on time”.
When my daughter at the age of 6 was diagnosed with Diabetes, I provided a blood sample to be used in research. My sister and two of my cousins also have TD1. It was obvious that I have a higher risk of developing the disease myself. When the results came back, I was surprised that not only am I auto-antibody positive, but I’m also missing the protecting allele against TD1
The doctor who called me with the news was very assuring and comforting. She said it’s possible that I develop diabetes, but not very likely. It was the first time I had my blood checked, so there was no way of knowing for how long something hadn’t been right in my pancreas. When the specialist found out I was auto-antibody positive, I was called in to the research clinic for a Glucose tolerance test.
The first test was taken soon after the phone call. I remember being even scared of the result. I started to make up different scenarios of what could happen if I would also be diagnosed with TD1 at some point. At first, I was thinking about the impact it would have on the treatment of my daughters diabetes. What if we would have simultaneous hypoglycemia some time and I wouldn’t be able to take care of her? Then I started thinking that I wouldn’t have the energy to take care of myself, because managing my daughters condition is very hard work, 24/7.
I started to create different scenarios about what could happen if I develop type 1 diabetes myself at some point …
Shortly after that I figured out, I might need to quit my job as a flight attendant if I would be diagnosed with TD1. Then I started worrying about going back to university after some 10 years to finish my master’s degree, how could I provide for my daughter without a regular paycheck.
After the results of the first Glucose tolerance test came back , the doctor called me immediately back for an another GTT, as my blood glucose levels were too high. Before the second test they told me to eat 150 carbs for at least one day before the test and to drink a lot of fluids. The second test and every bi-annual one after that came back negative, so no diagnosis of TD1, but still I have impaired glucose tolerance. This means that there is some malfunction in my insulin production, therefore there isn’t enough insulin present to process the glucose inside my body.
I now take the GTT (glucose tolerance test) every six months, and I check my blood glucose level once every two weeks. This is done just before bedtime, because usually the pancreas gets lazier towards the evening. In the current INNODIA study I also measure my blood glucose level in the morning. This is done monthly, and some blood drops are sent to the study, already the next day.
These values are usually normal and my HbA1c is still good as well. It’s the very large amounts of carbs that my body is not happy with anymore. And there is no way of knowing how long this has been going on. Without my daughter's diagnosis, I would’ve probably never known that something is off.
If my status changes from being a Unaffected Family Members with impaired glucose tolerance to being a insulin dependent person with type 1 diabetes, I will be beyond thankful to the INNODIA study, because I will most likely be diagnosed without e.g., severe keto-acidosis and start to take insulin at the earliest possible stage
If I get diagnosed one day, I hope I’m eligible for a clinical trial. And if there is more knowledge about the illness, maybe at some point it would also make my daughter’s life easier too.
For me this journey has given me a lot of new information on the possible development patterns of diabetes and also some insight about the research which is ongoing at the large field of auto-immune diseases.