As the name suggests MODY is one of the more rare forms of diabetes. The cause is a gene defect that stops the pancreas from producing enough insulin. MODY is typically diagnosed in early adulthood or late teens. At this point, the levels of insulin produced are no longer sufficient and will result in elevated blood sugars. In most cases, more family members are known to have diabetes, even if they have a type 1 or type 2 diagnosis.
There have been discovered many different forms of MODY over the last decade. At this point, there are up to 15 different genes that can cause a form of MODY! The different forms are simply numbered from 1 up. I have MODY 1 which means I have a defect in the HNF4alpha gene. The other numbers (MODY 2, MODY 3, MODY 5 etc. ) have another gene defect causing their problems with blood sugar regulation.
As you may suspect, a certain gene carries out its function in various places in the body. In my case, the HNF4alpha gene has a prominent function in the beta cells, the liver, the kidneys and intestines. This represents itself as a problem with blood sugar regulation, naturally high cholesterol levels (independent of diet!), in some people a disease called Fanconi syndrome in which you loose minerals (like calcium, fosfor, etc.) through the urine. Etc.
In most cases, researches are still in the dark about the different functions a particular gene carries out. And therefore, even if you know the exact gene that is involved, you are still unsure about the consequences of this defect.
The most commonly reported form of MODY with other organs involved is MODY 5. The gene involved here is the HNF4B gene. It is known people with MODY 5 often have kidney problems (cysts, problems with the filter function of the kidney,.. ), digestive issues and problems with the absorption of nutrients. In some cases, people with MODY 5 may have anomalies of the organs involved (for example a small pancreas).
I think it is extremely important to get a correct diagnosis. Not only to receive the best care for the diabetes part of the illness, but also to help researchers figure out the exact functions of these genes and the possible other organ systems involved in people with MODY.
In conclusion, I think I can say MODY is much more than just a rare form of diabetes. And we all have to figure out individually what care and treatment options we need. It’s just that the diabetes part is the thing we all seem to have in common and it’s also the part that’s best known by clinicians. If they even have heard about MODY!
A few amazing MODY (not private) instagram accounts you may be interested to follow and show you that MODY is more than just diabetes:
There are many more MODY diabetics out there. I choose only to share those talking openly about their illness and clearly stating that in the name of their account. Tip, by reading the comments on some of my posts and looking for people interacting with my stories you can discover other MODY ;)
Hope you all have a great beginning of the new year and please feel free to reach out, tell me your story or ask any questions you like, either through the contact form or through Instagram!