Photos like this one are fairly common in Type 1 Diabetes forums, usually accompanied by a comment like “DKA sucks!”, making light of the extremely unpleasant and occasionally deadly Diabetic Ketoacidosis. I decided to post a similar photo but with a positive story behind it. So this is me, sitting in a hospital bed in the research wing of a local hospital while they spent several hours measuring how my body reacts when I drink a high carb/protein shake and don’t take insulin for it.
Why participate in research?
When I was diagnosed with Type 1 Diabetes, I had the chance to enroll in the Extend Study, one of many studies looking into the possibility that a particular immune suppressant can help slow down the onset and progression of T1. The main part of the study is over for me, but I enrolled in a long-term followup that will track the progression of my disease as long as my body still produces a measurable amount of insulin. I also contribute samples of my blood to a biorepository so that current and future scientists can learn as much as possible about this disease in their search for its cause, new treatments, and an eventual cure.
While the chance to slow down the progression of this disease certainly factored into my choice to join this study, the more important fact is that participating in research has been an extremely rewarding experience in so many other ways. During the study, I had constant access to experts who have far more time to keep up to date on the latest research and trends about my condition than my regular doctors do. Additionally, many of the researchers and diabetic educators also have type 1 diabetes, and were able to share a lot of personal experience that was extremely helpful to someone like me who had been so recently diagnosed. Seriously, joining a research study was by far the single most helpful experience of my diagnosis.
All that aside, I just find the experience to be rewarding on a personal level. It’s actually quite difficult for research studies to find enough participants, and this is one thing I can do to potentially help everyone else with this disease.
How do I participate?
The easiest way to participate is to let the researchers know that you want to help. I’ve included some links here to a number of research registries I know about:
P.S. You can help out even if you have a healthy immune system! Research facilities like Benaroya Institute are always looking for healthy volunteers to provide samples for comparison to those of us with compromised immune systems. You can get in touch with them here to register:
P.P.S. If you have any more links to add to this list, please get in touch with me via one if the links to the left.