This is an introductory post on Monogenic Diabetes (MD), a form of diabetes that is neither Type 1 nor Type 2. It is caused by a genetic variation (or error depending on your view) which causes abnormalities in blood sugar regulation. MD is technically two types of genetic variations, neonatal diabetes and what is called Maturity Onset Diabetes of the Young (MODY). All the forms of MD are inherent at birth, but MODY typically is first diagnosable in children and young adults, hence the term MODY. In fact anyone can be diagnosed with MODY at any age and it is thought that at least 1-2% of all diabetes cases are MODY, so there might be more than 500,000 people in the US with MODY. MODY was first identified in the 1970s and there are now at least 11 forms of MODY that have been identified. And for many of these forms there are literally dozens of different variations that can lead to the genetic defect.
For years I’ve wondered whether I might have MODY. In the following, I’m going to give more background on MODY and in future posts I’ll discuss my journey leading up to being tested for MODY. It may seem strange that I would obsess about this but the most important thing to remember is that being diagnosed with Type 2 isn’t a specific diagnosis. Type 2 is a diagnosis of exclusion and that actually means that you have “Diabetes of Unknown Causes.” And if you don’t know your specific diagnosis you can mistreated, potentially severely mistreated. And unfortunately 95% of patients with MODY are misdiagnosed as either Type 1 or Type 2. In further posts I’ll tell you about actually getting the tests and eventually I’ll tell you when I hear about the results (which I don’t know yet).