Fighting misperceptions of diabetes in the mainstream media seems to be a losing battle sometimes. Case in point: this recent story in Women’s Health magazine about a “new wave” of fit and trim young American women developing type 2 diabetes — a condition they’re calling TOFI (thin outside, fat inside). What a load of crap!
Image from Women's Health mag
The article is about a “rarefied yet growing group of 20-30 year-old women developing type 2 though they are thin – it’s about how unhealthy they eat.”
This is just so typical of a health/ beauty/ women’s fitness glossy magazine looking for another eyebrow-raising headline. The reaction they’re after: What?! I’m subsisting on snack foods, salads and aerobics, but that big, scary diabetes might get me anyway?!
Geez, who wouldn’t stop to look at their photo of the supermodel injecting herself…?
Here’s what’s fundamentally wrong with the story, as pointed out by friend and leading CDE and author Hope Warshaw:
1) It is highly likely that these women have LADA, a form of type 1 diabetes in adults, and just haven’t been diagnosed properly!
and
2) By not researching and revealing this, the magazine is essentially “looking for a needle in a haystack when we’ve got millions of people who need solid info on ‘real’ types of diabetes.”
In other words, it’s media sensationalism doing its typical damage — misinforming by not telling the whole, true story, while hyping up some minor and dubious detail. Ugh.
I find it ironic that a story like this should appear just weeks after the Diabetes Advocates group announced a new “Assistance in Accurate Reporting” program to help the media get it right.
“Our goal is to stop being reactive and start being proactive,” fellow D-blogger and organizer Kelly Kunik said in the announcement release. “When a story with incorrect information is published, the damage is done. By making ourselves available to media and entertainment outlets, we are seeking to be part of a solution.”
But it’s near-impossible to be proactive when you just don’t know these stories are in the works.
I pinged Kelly, who’s lived with type 1 for almost 35 years, for reaction on this one. She says, “It is not made clear in the article if TOFI is a medical term or a term used in convenience without clarification as to the medical meaning. I am unsure as I have not heard it in all my years prior to this article… That being said, I do believe that this article is an example of the media not getting all the diabetes facts before they go to print.”
Buried about 3/4 of the way through the Women’s Health article, they do admit that “many of the slim women diagnosed with type 2 may not actually have that disease. Rather, they could have an undiagnosed case of type 1.” But this sure ain’t the message that bangs the reader over the head here.
I also pinged some medical experts, to be sure we PWDs are not overreacting to this story.
Legendary CDE and author Gary Scheiner writes to me:
“I agree with you, Amy. This article appears to be very misleading. It is extremely rare to see insulin resistant type 2 diabetes in women like those portrayed. When it does occur, there are usually contributing factors such as a significant family history of type 2, prednisone or cortisone use, post-pregnancy effects, or as you indicated, LADA. Type 2 in young, fit people is hardly the epidemic they describe. We’re better off focusing on where the epidemic truly lies.”
Endocrinologist Jen Dyer, also know as EndoGoddess on Twitter, had this to say:
Without really knowing the medical facts, speculation about ‘eating bad’ is inappropriate. In fact, just sensationalism without a true epidemiological study. However, epidemiology studies are confirming more cases of both type 1 diabetes and type 2 diabetes in kids and young people, this is a fact.
The most likely medical possibilities:
1. Early LADA (would most likely have blood tests positive for type 1 diabetes antibodies like GAD65, islet cell antibodies, ICA512)
2. Or, perhaps a rare condition called MODY (there is an available molecular gene test on the blood to confirm one of the 6 types of MODY)
3. Or, IF the girls are Asian or Asian Indian, they could have type 2 diabetes with only a small amount of weight gain as the genes for type 2 diabetes do seem to have a higher penetrance in this ethnicity (i.e. don’t have to gain much weight to get type 2 diabetes)
Dr. Steven Edelman agrees with Jen’s synopsis, while Dr. Anne Peters, director of USC Clinical Diabetes Programs, adds:
“Yes, there is much more utility in telling people who are at risk to check their diabetes risk factors than worrying people who are at low risk.”
Right. Utility. That’s what pseudo-medical stories about diabetes should be aiming for, correct? Helping people who need it, rather than throwing yet another albatross around the neck of these poor young yuppie women, probably already obsessing about their weight and health.
)
I didn’t see the article you’re referring to, but I know from my own experience that a young, thin woman can be misdiagnosed with type 2. I have LADA, but the onset was so slow, that doctors totally missed it for years.
Thanks for encouraging accurate reporting, Amy.
Interesting.
Ugh, I was also misdiagnosed as having Type 2. My original endo wasn’t at all bothered that I was underweight, active, and on a lowish carb diet. No, he assured me it was impossible for me to have Type 1 because that was incredibly rare and he saw young, thin Type 2s all the time. Makes you wonder.
The media never ceases to amaze me. When did it become okay to publish something with little to no research? Oh wait, apparently always. At least when it comes to diabetes.
The article makes me sad. I started a group on Facebook for LADAs and MANY of the members were misdiagnosed as type 2 well before they were properly diagnosed as LADA.
The image is even more annoying. I doubt many of us look like that as we inject our four shots a day or insert our pump devices.
You have definitely outlined the salient points. I actually think ANYONE who is diagnosed at ANY age, and at ANY weight should have antibody tests, because I have seen a couple of overweight or obese people on TuDiabetes turn out to be T1 with positive antibody tests.
I have never heard the “TOFI” term either, but I HAVE heard of the concept of metabolically obese. That would apply to people who seem slim, but in reality have little muscle mass and a high body fat percentage. So, yes, T2 CAN occur in a young, seemingly slender person, but it really doesn’t make sense to automatically assume that’s the case without antibody testing.
Also, sometimes MODY can pop up as a spontaneous mutation, meaning that neither parent has it, which is usually the case, because it’s autosomal dominant. But MODY testing is literally NEVER done, unless the patient themself has the will to fight with the doctor and the insurance company to cover it — it’s expensive.
And the media is already responsible for a lot of shame and reluctance to seek treatment on the part of T2s; it’s even more heartbreaking that they have found yet another inappropriate target.
Very good points here as the media and marketing are not getting things right and data and reports are spun and full of it today and like you said, the importance is “real” education for sure. I talk about that with all areas of healthcare and it’s a bit out of hand. I used to write code so I know the mechanics and I spent 25 years in outside sales, so I get that part of it too:)
It’s interesting though and for that purpose I have featured a couple of the math and statistical folks who have come into my circle here too that are even higher authorities than me.
If you watch the video by NYU professor Charlie Siefe on my page, about 30 minutes you will think twice about clinical trials and how results are reported. This guy gets it and his presentation at Google NY is great. Also recently another person from the web came into my email realm and he has a lot of good information and even has some great suggestions on fixing some of the reporting.
His specialty is data mining and he has a long pharma background with all of this. Check out Stan Young at NISS, the National Institute of Statistical Sciences.
http://www.niss.org/content/s-stanley-young
I agree we don’t need anymore “invented” media sensationalism for sure, but it thrives and makes it hard for those who need and want information to sort all of this out. Mr. Young agrees with us too in the fact there’s a lot of “junk” out there. There are very talented programmers and coders out there way beyond my talents but again when you can visualize and recognize part of what is going on it’s even more frustrating so some of us out here are trying to get the truth and knowledge out to consumers.
My god, how much insulin is she “injecting?” Looks like about 50 units! Hope it’s basal!
What is really sad is that the author of this Women’s Health article actually posted on TuDiabetes.org looking for young, thin women with Type 2 diabetes. Quite a number of us on TuD responded to her and told the author that those “young thin T2s” were probably misdiagnosed Type 1s/LADAs. I even had an email correspondence with the author, and she agreed that she had heard that very same thing from many, many people. So why did she persist with this ridiculous article that spreads misinformation, and actually truly hurts people? Misdiagnosis is really dangerous.
It’s dismaying that selling magazines is more important than getting the facts right. Even as a Type 1 diabetic, I daily educate people around me: “So, you can’t have sugar?” Groan! Maybe we should try to get on Dr. Oz and really get the message out so we individually don’t have to work so hard. I am also concerned that young women are already inundated with a media that tells them they’re too fat and not good-looking enough. Let’s give these women a break and respect them enough to give them the facts without sensationalism, Woman’s Health!
Thanks for this article, Amy. I agree with your concerns and think this is a good example of media sensationalism that can really be damaging. It’s a shame they keep doing this.
Here is the original TuDiabetes posting from the author of this Women’s Health article:
Hello to the TuDiabetes community.
My name is Su and I am a writer for a National women’s magazine. I am writing a story about how women of all shapes and sizes, even those who are thin, can develop type 2 diabetes. Hopefully this story can help raise awareness about diabetes among people who consider themselves not at risk. I am looking for women to profile in my piece, particularly young women in their twenties, thirties or early forties who are not overweight and have been diagnosed with Type 2 or prediabetes. I may also include one Lada woman. Participating would involve a couple interviews. No photos are necessary. If interested, please contact me at sushma.subramanian@gmail.com.
Here is part of my reply to her:
Misdiagnosis and the parading of wrong information in the media only makes life worse for women who actually deserve a correct diagnosis and correct treatment. Instead, I suggest that you ask for stories from women who have been misdiagnosed as having Type 2 when they really have MODY or Type 1. By shining a light on this terrible problem, you could do a lot of good.
I got this issue of the magazine in the mail–how I am receiving issues of Women’s Health, I have no idea because I certainly did not subscribe, but that’s another story.
While I found the article cagey at best, I did have to stop and give them a tiny amount of kudos for actually explaining what Type 1 is, and that it is different from Type 2 diabetes. With all the media garbage out there that never draws a distinction, it was one tiny refreshing piece to this article.
The rest though? Iffy at its best.
I am 112 lb, eat very healthy, and have type 2 diabetes. It makes me angry to see the way the media slants things looking for a hard hitting headline.
Sometimes diabetes is just something someone is genetically proned to. I had gestational diabetes in both my pregnancies. It just wore my system out.
My brother is young, in shape, and has diabetes also. So it is NOT true that only FAT, unhealthy eating people get diabetes. Health conscious thin people get it too.
I think the last statement can’t be over-emphasized enough. Women’s Health, with its diet and fitness advice and cover to cover images of atypical women’s bodies is just the sort of thing that women who have concerning preoccupations with weight, fitness, and dieting like to read. Giving them a pseudo reason to justify their preoccupations is truly a disservice, and for some women, could add fuel to already dangerous fire. It’s a shame journalistic integrity was completely disregarded in their pursuit of a “good” story. I’d love to see then respond to the criticism of this article… but I suspect that’s unlikely.