Wil Dubois

Diabetes itself -- and now the technology to treat it -- comes in many forms. Today at our diabetes advice column Ask D'Mine, veteran type 1, diabetes author and community educator Wil Dubois is riffing on MODY and the FOMO (Fear of Missing Out) phenomenon.

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Troy, type confused from New York, writes: Looking for encouraging words about MODY...?

Wil@Ask D’Mine answers: Ummmm…. It will be OK? Oh. Wait, for the rest of you readers, we need to give you some background. MODY stands for Maturity Onset Diabetes of the Young, which is both misleading and confusing, so it’s also more accurately called monogenic diabetes. Now, all of us T1s and T2s suffer from polygenic diabetes—meaning there are multiple eff’d up gene sequences in our bodies that have led us to our current circumstances. MODY folks, on the other hand, have diabetes caused by a single aberrant gene.

Actually, I should say that each subset of MODY is caused by a single gene gone awry, because MODY comes in about a dozen flavors, all of which are waaaaaaaaay rarer than the already rare type 1. And because MODY is so rarely seen by clinicians, it’s often misdiagnosed as type 1 or type 2. More on that in a minute. MODY runs strongly in families. If one parent or the other has it, there’s a full 50% chance each of their children will get it.

Onset of MODY-triggered diabetes is typically prior to age 25, but like pretty much any other health condition on the planet, you can get it at any age. Some subtypes of MODY, such as the most prevalent HNF1-alpha type can be treated with oral medications like sulfonylureas, as the gene mutation simply causes underproduction of insulin by the pancreas. But folks with HNF1-beta variety usually require insulin. Unlike type 2, MODY is not responsive to lifestyle change, so diet and exercise aren’t treatment options. (Note that Athena Diagnostics has set up an info site for patients and doctors called MODYAwareness.com)MODY Diabetes awareness

How does MODY really vary from other diabetes? In the trenches, it doesn’t, IMHO. I’m sure I’ll piss off the International Association of MODY Sufferers, if there is such an organization, but in my opinion MODY doesn’t matter. It’s just another form of diabetes. It’s triggered by one gene not two, ten, or twenty. Who cares? The blood sugars still need to be treated.

Without treatment, the risks are the same; high blood sugar is poison for the body regardless of the cause.

MODY diabetes, in general, seems no worse than any other form of diabetes. OK, so you can give it to your kids. Heck, type 2 passes on to the next gen very easily as well, and now that we’re in our fifth generation of type 1 survivors, it sure looks like it’s possible to pass on that family tradition, too.

All of that said—if you are forward-looking—anything that’s caused by a single gene seems a better candidate for the growing field of genetic therapy than our more common (and complex) polygenic forms of diabetes.

Bottom line? The encouraging words are that I see a cure in your future before I see a cure in mine.

Patricia, type 1 from North Carolina, writes: I’m a type 1 of 62 years, having been dx’d when I was 2. I’m simultaneously over- and underwhelmed with all the new technology that is now available. Yes, I’m old, but don’t have so much cognitive decline that I can’t remember my last few meter readings. I can remember to suspend my insulin delivery when I’m low. I don’t need to be reminded to take my bolus, etc. What exactly is the purpose of all the bells and whistles increasingly associated with new pumps? I’m burned out trying to keep up and only do it out of FOMO (fear of missing out). How can I decide which latest and greatest new thing to actually pay attention to, and which to tune out?

Wil@Ask D’Mine answers: First off, Patricia, I can’t support your notion that at 62, you’re old! My dad always said that “life begins at 40,” and by that math, you’re just barely old enough to legally order a drink!

But I share your frustration on the latest batch of diabetes tech. The recent improvements are marginal compared to what you’ve experienced in your more than six-decade diabetes career. You’ve gone from urine strips to blood glucose meters to CGMs. You’ve seen insulin change from slaughterhouse salvage to engineered miracles. I bet your mother sharpened your needles on a kitchen whetstone while she boiled your glass syringes on the stovetop to sterilize them, and now you have more computing power on your waist controlling your very own personal insulin pump than took mankind to the moon.

And what does the industry give us now? Ever more precise delivery increments to the point where accuracy almost exceeds utility. More basal steps than we need. More alarms no one uses. Fancy color screens for the sake of having color, that can sometimes make it harder to read our devices rather than adding value. Skins to change the look of our gear...FOMO - fear of missing out

What is the purpose, you ask?

A lot of it is just marketing, plain and simple, to make the products more appealing. While there's nothing wrong with some improvements in the aesthetic feel, few of these changes make fundamental changes in our diabetes lives. Well... with the notable exception of accurate CGMs, that is.

But have we reached the pinnacle of innovation?

Even as cynical as I am, I do believe that somewhere out there, in a basement lab, the next BIG thing is being developed -- a thing that will truly relieve us of the burden of diabetes management as we know it. Something so big that we can’t even visualize what form it might take...

So my advice? Stow your FOMO and go ahead and sleep though the buzz about all the current bells and whistles -- because when something truly revolutionary happens, everyone will be talking about it so loudly there will be no sleeping through it!

Don't worry - you won’t miss out, and I’ll bet you’ll live to see the Next Big Thing.


This is not a medical advice column. We are PWDs freely and openly sharing the wisdom of our collected experiences — our been-there-done-that knowledge from the trenches. But we are not MDs, RNs, NPs, PAs, CDEs, or partridges in pear trees. Bottom line: we are only a small part of your total prescription. You still need the professional advice, treatment, and care of a licensed medical professional.

Disclaimer: Content created by the Diabetes Mine team. For more details click here.


This content is created for Diabetes Mine, a consumer health blog focused on the diabetes community. The content is not medically reviewed and doesn't adhere to Healthline's editorial guidelines. For more information about Healthline's partnership with Diabetes Mine, please click here.