Real life experiences
Through the eyes of Stephan
24th of July 2023 by Stephan
Knowing where to start with your diagnosis of type 1 diabetes can be a challenge. But it’s not a challenge you have to face alone. Here’s the story of Stephan who explains what made him decide to take part in the INNODIA project and who praises the great support he received from the INNODIA team!
“I’d been losing weight, which I put down to my excessive
sport activities, and feeling unwell, which I put down to an
earlier flu that month. However, I didn’t have any
explanation for my extreme thirst or my constant urge to
use the bathroom.
But for my family physician, it only took a split second to rush me to the hospital and see an endocrinologist, right away! He, of course, recognized all the symptoms that were unclear to me. From there, it all went very fast.
A type 1 diabetes (T1D) diagnosis isn't the sort of thing you expect to happen in your late twenties. But it did”.
What did you feel when being approached by INNODIA about T1D research soon after diagnosis?
“Soon after being admitted to the hospital, I was approached by the INNODIA team to take part in an observational study. ‘A what study?’, I asked. At first I was a bit hesitant, there was already so much going on. I felt as if I was hit by a truck. But the good thing was that I had a lot of time to think. And after I had some quite intense and encouraging talks with the staff and with my family, research involving experts in the field of my condition seemed like a very good idea”.
What motivated you or influenced your decision to take part in INNODIA?
I wanted to help in any way I could, and turn something bad into something good. I also was curious whether participating might help me find out any additional information about my condition. I surely hoped it would bring researchers a step closer to prevention, future medicines, a cure, … anything that might benefit me and anyone else in the same situation.
What would have put you off taking part in research?
I was honestly worried that I’d have to take too much time off from work. As a freelancer, any missed days are lost revenue. However, participation didn’t affect my work in any way. The few occasions I needed to go to the hospital, I didn’t have to wait at all, sample taking went really smoothly and I was provided with a quiet space where I could open my laptop and work.
What do you think is a good time and a good way to approach people about type 1 diabetes research?
Being offered to take part in type 1 diabetes research provides a spark of hope when a patient has just received bad news. So even though it doesn’t seem like it, offering the option to contribute to the much needed research possibly is a good time to approach and involve people in a study. I also think people with newly diagnosed type 1 diabetes are more likely to agree to be involved in research at this time due to the perceived possible personal gain. For me, highlighting the additional potential help and clinical support was a big factor in agreeing to participate in the INNODIA project!
THE INNODIA TEAM TAUGHT ME A LOT ABOUT THE DISEASE AND HOW TO MANAGE IT ON A DAILY BASIS. PHYSICALLY AND EVEN MENTALLY.
Coming to terms with my condition has been difficult. The psychological aspect of T1D has had as great an impact as the physical consequences. But to my surprise, the INNODIA team did not only take samples for research! They also taught me a lot about the disease and how to manage it on a daily basis. Physically and mentally. They really help patients thrive with diabetes - no matter where they're at in their journey. That was very encouraging! My hope is that my data will increase knowledge and contribute to a better future for those living with type 1 diabetes and for those at risk!