Hi and welcome everyone! I am so excited to start this blog! But first things first. My diagnosis story and what is MODY?
In the fall of 2013 I went to my GP for a yearly check-up. I know not many people my age do this. It was a habit that stuck from my time as a competitive swimmer. I did not expect there would be anything the matter since I had been healthy all my life and did not have any complains or symptoms at that point. Imagine my surprise when the GP called in the next day to tell me my glucose levels were off!
Diabetes runs in my family and since my mum is a diabetic too, the GP suggested I used her glucometer to check my fasting glucose for a couple of days.
I can't remember the exact numbers but they were way too high for a healthy person. I would have to consult the university hospital in Leuven, but had to wait another month to get an appointment. By then I had started my third year at university and had lots of distractions, fortunately :) I didn't worry to much 'till the day of the appointment itself.
I spent a whole day at the hospital that day. Which was very confusing and overwhelming, as you can imangen! The following blood tests had confirmed I had diabetes but that it wasn't type 1. I didn't have any anti-bodies. Since diabetes runs in my family they suspected a monogenetic cause or problems with my pancreas. My mother, grandmother and uncle all have diabetes, although their official diagnosis is type 2. My father has a history of pancreatitis (an inflammation of the pancreas), which could also lead to pancreas malfunction.
It was clear I wouldn't have the answer anytime soon. More blood work and an MRI to take a closer look at my pancreas would hopefully get us some answers. In the meantime, I was send home with type 2 diabetes medication, Metformin en Unidiamicron.
I had to wait two month for the MRI, which showed no issues with my pancreas. Fortunately!. The results of the first round of genetic testing took three months. The results showed I didn't have any of the monogenetic defects they tested for. My HbA1c ( a number that indicates the average level of your blood glucose over the past 2-3 months) came back in normal range however. So I just had to continue with the medication and wait another three months. And than another three months...
Finally, after almost ten months of knowing I had diabetes, I received my final diagnosis. Maturity onset diabetes of the young, subtype 1. Or MODY1 for short.
The only information they could give me at that time was:
- I have an inheritable form of diabetes caused by a single gene defect.
- That 'my' variant was progressive and would get worse over time.
- I would have to consult them when I ever considered having children.
Of course there is a lot more to know and consider about this disease. I had to figure it out all by myself. But this would take me way too far for a single post.
By that time, though, I thought I had accepted my diagnosis and was confident I could battle it! Nothing much had changed except some dietary guidelines and three pills a day. I didn't realize what journey I had embarked on and how much my life would ultimately change.
In one way, I am glad I could slowly adjust to becoming 'more and more' diabetic. Although it did leave me with a constant feeling of failure. It made feel guilty for progressing in my illness and in response I adapted a very unhealthy relationship with food and excercise.
By writing about it, I hope to help others to not go down into this rabbit hole!
I am happy to report I have recently made a huge step back to physical and mental health. So don't worry. More about that later.
Now you know a little bit more about the beginning of my journey and the basics of MODY. Feel free to ask away if you still have any questions. I am looking forward to share more of my life with MODY and all the ups and downs that come with it.
photo of my last summer before dianosis