I have been diagnosed with Type 1 diabetes at the age of 30. Having that type of diabetes, I have been treated with insulin: 4 daily shots (3 times fast, one time durable insulin). 20 strange years later – 3 years ago – I got a letter from a doctor from a Diabetes Center Steno in Copenhagen. He got his PhD on the treatment of MODY 3 patients. He came across my case during a search of the clinical database (on the basis of the levels of my C-peptide in the last two decades) while seeing me as a potential participant in his doctoral research.
After having consulted my diabetologist (who approved the idea of participation), I entered the project with the same amount of curiosity, hope and skepticism. A few days after the initial tests (in order to measure if I am admissible as a test patient), the result was clear: I am a MODY 3 patient and as such I could enter the project as one of the test patients for the addition to the standard MODY 3 treatment. Basically, MODY 3 is a “diabetes in between“: it appears as though it is T1 or T2 (depending on the diagnosis of DM) but it is neither. I have almost normal production of insulin but I need treatment in order for it to work (in that case it looks a bit like T2 – to read further about MODY look below). So now, I have started to take standard medications for MODY 3 + the supplement (which was the study case for the examination) or placebo! I never found out if I was getting the additional medication or the placebo (it would be a breach of the research protocol if they had told me) but anyway the treatment worked just fine and I haven’t taken insulin since the day I drank my first pills with breakfast!
According to the data of the Danish Diabetes Association there are 5 known types of MODY (type 1, 2, 3, 5 and 10). Type 3, which is what I have, is a genetic mutation of the HNF1A gene (and please, don’t ask me what it means exactly). The estimates are that 1-2% of people with the DM actually have some type of MODY but often those patients are replaced with T1 if they have been diagnosed with DM while being relatively young (as was in my case) or with T2 if they have been diagnosed with DM later in life. In Denmark we have approximately 350 patients who have been diagnosed with MODY but the estimate is that between 3000 and 6000 DM patients (diagnosed as T1 or T2) are actually MOBY DM. So, even though the state is utterly unrecognizable, the chances that you are one of them are not that big!
Being a part of a scientific study while getting daily medication treatment, I had to go to a clinic for various two-month examinations over a period of about one year. A usual day of the trial started with a sign up, which I had to do on an empty stomach, after which I would spend the next 6-7 hours in a hospital bed while giving a couple of blood and urine samples. After about 4 hours, we did a physical test on the stationary bicycle, and the first “meal“ of the day was a protein shake which tasted pretty unpleasant (we could choose between vanilla, chocolate and strawberry flavour) and which we had to drink bottoms up (which for a gourmet like me was highly unattractive.
The whole time while participating in the research I have measured levels of glucose in my blood, as I did before, and I took additional care of taking pills properly. After a year, I was “released“ from the project and was taken back to my usual diabetic clinic, where my diabetologist continued the treatment with medications. After about another year of taking the initial two medications (standard medication and the supplement which the research was focused on) we added another one. For now it seems that this combination has further improved the HbA1C.
At the beginning, insulin withdrawal was a huge change. I was afraid that glucose in my blood would sky rocket„ but that never happened. Constant monitoring of my BG levels helped me in overcoming that fear. The process of “forgetting“ all the small routines regarding the insulin lasted a lot longer. For example, I used an insulin pump when I got in the before mentioned study for MODY 3 and I always carried the pump in my front trouser pocket. I was used to being careful while going through the door, in order to avoid the pump catheter getting caught on the door knob. I have probably looked quite silly for a certain period of time (I know I felt silly) because I still kept walking carefully through the door, without any need to do so.
I never had a lot of consciousness about me being a person with diabetes: I simply never saw myself as “a patient“ or a person with some kind of disability. After having worked at the Danish Diabetes Association for ten years and with different medical societies which deal with diabetic foot ulcers for two years, I am completely aware of the fact that not all people with DM are as privileged as I am in that point of view.
The ability of ceasing the use of insulin and controlling diabetes with a simple consumption of a few pills each morning, is truly liberating. I have much less hypoglycemia than before; I eat and drink mostly everything I like and enjoy; I have always been pretty active in terms of exercise, and drinking the medications instead of taking insulin made it a whole lot easier. For example, I don’t have to calibrate the insulin pump before I go cycling anymore. I am still a bit worried about the level of my HbA1C. At the time when I was diagnosed with T1, I already had an extensive proliferation of minor blood vessels on both eyes (diabetic retinopathy). In that time (20 years ago) we put it under control quickly and since then, my state was completely stable, yet with all these changes I am starting to feel a little bit concerned. To be without insulin is very liberating but in a certain sense it is also a loss of control. Only time will tell how my relationship towards all of that will develop and how the situation will change.
In a broad sense I believe that – as patients with DM – we can look further in the future with hope that we will live longer and healthier. My grandfather (on my mother’s side) was a T1. My father was a T1 (or to be more correct – according to everything, he was also MODY because our DM stories are completely identical). Unfortunately, I lost him at the age of 17 so we will never know. I am MODY 3.the medical and technological development over these three generations was enormous: from the relatively bad insulin, encoded with syringes which today seem as nails, to much more better insulin, enhanced ways of delivery – smaller, more sharper syringes, greater and more intelligent pens and insulin pumps. From random doctor’s examinations to flexible measurement of sugar levels in the blood whenever we wish for it. Even though I had mentioned only a part of the progress, if you add an ongoing growing understanding of the human genome, our physiology and biochemistry (etc.) to it, I am truly looking positively on the future of people with any type of DM.