The Ricki Lake Type 1 Blunder

This is the post the Huffington Post rejected. The first in 50.
Don’t ask me why, I wasn’t told, but I think you shouldn’t miss the opportunity to read it and see what you think:

Ten days ago on “Good Morning America” actress and former talk show host, Ricki Lake, said juvenile diabetes was preventable. She’s since apologized. “This was a mistake on my part and in no way was meant to offend anyone dealing with the very serious disease of juvenile diabetes.”

Lake was speaking about her new book and AllStride program to combat childhood obesity when she made her mistake. “I commented that juvenile diabetes was preventable when in fact it is type 2 diabetes. This was a mistake on my part and in no way was meant to offend anyone dealing with the very serious disease of juvenile diabetes.”

I’m not offended. In fact, I’m a little delighted. Her mistake only confirms the public’s confusion about type 1 and type 2 diabetes. Even Lake’s interviewer smart guy, George Stephanopalous, didn’t catch her mistake. Now that is one thing I am sorry about. That the error was not snuffed out in its tracks and may deepen the confusion for those who didn’t catch Lake’s apology.

You’d think Lake, who’s advocating stemming the tide of childhood obesity – linked to the rise of type 2 diabetes in children – would know better than to confuse juvenile diabetes (type 1) with type 2 diabetes (adult onset diabetes). Type 1 diabetes is an auto-immune condition, not related to weight or a sedentary lifestyle and it’s not preventable or reversible.

Lake probably does know better, and it was probably a glitch of the mind, just a slip of the tongue. Then again, she actually made two mistakes. The name “juvenile diabetes” was changed to “type 1 diabetes” in 1997.

Then again you’d think Dr. Oz, “America’s doctor,” would know better. When he appeared last year on Oprah Winfrey’s program on diabetes he actually said, “Type 1 is also called juvenile diabetes and you are born with it.” Oh, my, born with it. That’s a pretty HUGE mistake! Just to clarify, while type 1 diabetes occurs more often in children than adults, you are not born with it.

Do I blame Lake for her blunders? Not at all. These are the type of mistakes the general public make all the time. Most people don’t even know there’s such a thing as type 1 diabetes as we are so overshadowed by all the media and pharma attention on type 2 diabetes. I am less understanding however how Dr. Oz could get it so wrong.

Maybe you’re thinking what’s the big deal? The big deal is multi-pronged. I believe the lack of recognition of type 1 diabetes and understanding its daily life-threatening nature, impedes urgent and necessary funding toward a cure.

The fact that type 1s are judged harshly by the public for “causing their condition” is just plain hurtful, just as much as to type 2s. The fact that we are invisible against the large canvas of type 2 diabetes is often painful. The fact that the public is so misinformed and uninformed may actually hinder life-saving treatment when a type 1 needs it.

So let’s go back to that “life-threatening” part: As a type 1 every day, every few hours, I have to test my blood sugar and then often do something to return it to a near-to-normal, safe zone. If my blood sugar’s too low I can fall into a coma and die. If my blood sugar’s too high my body can produce toxic acid in my blood stream called ketoacidosis, and over time I will likely succumb to a premature heart attack, blindness, amputation, host of nerve conditions and have a life span 15 years shorter than if I didn’t have type 1 diabetes.

If you’re interested, you’ll find a side by side comparison of type 1 and type 2 diabetes in “The type 1 versus Type 2 Diabetes War.”

One thing I noticed in the diabetes community regards Lake’s mistake was upset from parents of children with type 1 diabetes. If you want a little window into living with type 1 diabetes ask any parent who has a child with it. A mother or father who has to hold their five year old down every day to give her several injections a day. Who has to poke their child’s hurting, tiny little fingers all through the day to get a read and regulate her blood sugar. Who has to force their child to eat when she doesn’t want to and stop her from eating when she does. Make her move when she doesn’t want to and stop her from moving when she does.

Most parents go to sleep fearful every night that their child will not wake up due to a dangerous blood sugar drop overnight that can not always be predicted or prevented.

I have asked these parents what it’s like. I also know that children with type 1 diabetes grow up and become the person sitting next to you, sitting unseen with her invisible life-threatening disease.

I think type 1 diabetes needs the recognition that type 2 diabetes has gained. I think the roughly 3 million people with type 1 diabetes, living in the shadow of the almost 25 million with type 2 diabetes, deserve to be acknowledged for what they live with and what they do to keep living, every day. For their courage, for their hope, for their tenacity.

So Ricki, while some say your mistake has added to the myths of diabetes, I thank you for what it has also done – brought more media attention to type 1 diabetes than we’ve had in a long time.

This is also the post A Sweet Life ran immediately. Thank you.

Well, Ricki also got it wrong that Type 2 is preventable & here we go again with the simplistic T2s eating their way to disease. Two major blunders.

Many of these celebrities know very little about what they say. They are the ones with the wacky diets and the wacky cures and whats trendy in 90210. Its too bad the public looks up to them. There is alot of poor information given, not just about diabetes either.

T2 is preventable?! Now this reporter corrected Ricki, who is going to correct this reporter. Also Type 2 is not Adult onset and type 1 is not limited to kids. No wonder many non-diabetics do not understand the disease.

I was really surprised when I read in detail this blog and the supporting blogs underneath it. You are an active and well recognized voice for the DOC, and you are certainly valid in your criticism of Ms. Lake with some of her statements about T1, but you I would also point out that you yourself are making statements about T2s that are just as bogus. When I read through your post from June, I was quite surprised at some of the things you stated:

Risk Factors: Type 2 is actually has a stronger genetic connection that Type 1. GDM is big risk factor for T1. (T1 and T2 are very similar, not different)

Nature of Illness: Type 2 is caused by defects of insulin resistance and insulin secretion, Type 1 is a defect of insulin secretion (T1 and T2 are very similar, not different)

Onset: LADA “is” T1 and by some estimates 15% of all diabetics are LADA (most of T1) and progression is on average over a period of years (T1 and T2 are very similar, not different)

Preventable: OMG! This made me spin out of control. I’ve never seen any evidence that T1 or T2 diabetes is preventable. Can you help me?

Reversible: Double OMG! Where did you get this from. There is no cure for T2 diabetes. The DPP and Look Ahead trials simply showed that you can “manage” T2 diabetes with diet and exercise. I’ve not seen a single study that suggests you can reverse or cure T2 diabetes.

I have a lot of respect for you, you’ve been a great voice for the DOC. But I believe we are in a critical time with the ADA pushing for a war on obesity as the “cure” for diabetics and the way the nation can prevent new cases. I hope you take my comments in a helpful light. I trust you will keep an objective eye on things and continue to speak what you believe is the truth.

I appreciate what everyone has said and I agree we are all voices trying to share valuable information and get on more radar screens. Given we can agree to disagree since I have learned nothing about diabetes, type 1 or 2, is carved in stone, let me address a few points raised to the best of my ability:

Risk Factors: This is a key point where the actual causes of both t1 and t2 are not certain. Almost weekly there is contradictory information regarding the play of genetics.

Nature of Illness: 40% of t2s ends up using insulin down the road yet T1s cannot be insulin independent, ever

Onset: Talking with experts the rate of onset is different, not to say there aren’t situations in which they cross

Preventable: This is really interesting, because many in the field will tell you T2 may be preventable for some through lifestyle changes. The whole ADA push 2x/year to generate awareness so people get tested and if they’re at risk (it’s in their family and they’re overweight and sedentary) they begin to make changes before a diagnosis. This may make it preventable for some, whereas we know nothing now how to try to prevent t1. Sorry.

Reversible: Maybe it’s semantics, but many t2s who have enough beta cells that are still well functioning can lose their symptoms and eliminate or reduce their meds with weight loss and exercise. Doctors like Michael Danzinger is all about reversing diabetes. That’s the common usage of “reversible” in diabetesland. I didn’t say it goes away, it resides dormantly. If you gain weight and stop being active, your symptoms will return.

I hope that helps clarify some of the comments. While t1 and t2 share many commonalities, they are also not the same condition. That was the point of the chart and having a conversation like this. Thank you.

Thanks for taking the time to respond. In truth, I have come to believe that type 2 is probably a spectrum of disorders, or some collection of different defects and one persons type 2 is very different that another persons. I am most sensitive about public health initiatives which I feel are off track and may lead to the harm of millions of people. I am familiar with Dansinger, and I think he is part of the problem. I am most concerned about messages that type 2s became diabetic through choice and that they can be cured, I have looked at the studies and I don’t see it. Thanks for taking the time to respond.

One thing I’ve learned, like you, is our diabetes is just that, our diabetes and we all have a variation on a theme. I’ve had several occasions to spend a few days with friends who also have type 1 (of course I can only compare myself to type 1) and discover we all take different amounts of insulin for the same meal and have different insulin: carb ratios. Also, why do some get complications and some not? Is there a genetic reason or extra hormone. This is one of the most complex conditions even tho most think it’s all about don’t get fat and move! LOL!

I agree with you. And I respect Ricki Lake for apologizing, not just once but also when she went on the Joy Behar show again that evening. She tried to set things straight, unlike Halle Berrie, who should and does know better, deliberately added to misperceptions and refused to speak further on the matter, letting her ridiculous statement that she “used to be a Type 1 but weaned herself off insulin so now considers herself a Type 2” stand. When she should have simply stated she was misdiagnosed as a Type 1 and is a Type 2. Implying that through sheer effort and willpower she cured herself of Type 1. When a child is diagnosed, you want everyone to know how serious this is… except, you then realize, that child will be discriminated against. Parents will be afraid to have the child over on playdates, after school programs won’t take the child, so in order for the child to live a normal life, you cannot tell everyone the complete story. You have to minimize; you have to tell them just enough so your child is safe but not go into too great detail. And, she will grow up and have to compete in the job market. The same holds true. How much do you want people to really know? They need to know enough so they are motivated to donate money towards a cure, but the main goal is for the child to live as normal a life as possible. So… Catch 22. Sometimes we don’t want, and I know she never wants too much scrutiny.

Well, like Riva just pointed out, every diabetic is unique. I find it hard to criticize Halle Berry when we just don’t have the information. In fact, our fellow member Michael Barker argues quite reasonably that Ms. Berry is probably a “ketosis prone T2,” and this would support entirely her history and public statements.

Ralph Defronzo, who I really respect, in his 2008 Banting award lecturetalked about his belief that there are at least eight major defects that contribute to T2, and these can occur in any mix. Although we might wish to clarify the differences between different types of diabetes, it is not just about type 1 versus type 2 and I prefer to think of everyone who has diabetes as sharing something in common with me even if their diabetes manifests itself in totally opposite ways.

Actually most of Type1’s are Born with the gene and it is then triggered by some unknown reason.

All diabetics are born with some gene(s) that give them the susceptibility to one or the other or both Types of diabetes. Whether those genes are triggered is another story. I really resent all the misinformation that passes on in the media – and a good number of doctors buy into it too. I’m a glorious 5 lb. over BMI 24.9, so that must be what caused my diabetes, right? If you believe that, I have a bridge to sell you! LOL!

Hi Riva: I really appreciate all that you are doing to increase awareness of Type 1 diabetes. Unfortunately, you are also promoting myths about T1. Type 1 diabetes is not a childhood disease, and the majority of new-onset Type 1 diabetes is seen in adults. The CDC’s most current information on the prevalence and incidence of Type 1 diabetes comes from Diabetes in America, Chapter 3, “Prevalence and Incidence of Insulin-Dependent Diabetes” (Diabetes in America, Second Edition, 1995), and the CDC states that 56% of new-onset Type 1 diabetes is seen in people over the age of 20 (adults), and that figure does not include people with slow-onset Type 1 diabetes (LADA) such as TuDiabetes founder Manny Hernandez. According to diabetes researcher Jerry Palmer, adult-onset Type 1 diabetes (both rapid-onset or slow-onset) is two to three times more common than childhood onset Type 1 diabetes. So saying “while type 1 diabetes occurs more often in children than adults” is not correct and is perpetuating a myth. Then in one of your comments you say, “40% of t2s ends up using insulin down the road.” People with LADA are presently included in the statistics for Type 2 diabetes, despite the fact that NIH/NIDDK defines latent autoimmune diabetes in adults (LADA) as adult onset Type 1 diabetes. If people with LADA (slow-onset Type 1 autoimmune diabetes requiring exogenous insulin treatment) are removed from this statistic, about 25% of Type 2 diabetics eventually require insulin. Type 1s are actually undercounted because so many adult-onset T1s are misdiagnosed as having T2, and thus T1s probably number far more than 3 million people in the United States.

Thanks Melitta for your information. In a way, we can see how confusing the information around us is, including how statistics are used. It appears from what you say sometimes LADA is counted as type 1 and sometimes type 2, which mucks up the stats even more, it can’t be in one camp and then the other. I find conflicting information about diabetes is more the norm than not. Try as we might, I think we can’t be absolutely sure of a lot but we try. I myself haven’t read that type 1 is occurring more in adults than youth, but then again that LADA variability may be the deal-breaker. Anyway, thanks for bringing that to my attention.

Hi Riva: Thanks for your reply. The CDC statistic that 56% of new-onset Type 1 diabetes is seen in adults (as opposed to children) is just the adults who have rapid-onset Type 1 diabetes and have been correctly diagnosed. The CDC goes on to say that LADAs are not included in that 56%. If LADAs are included, it is way more than 56%. Anyhow, I agree with your efforts for a different name for Type 1 diabetes, and appreciate all that you are doing!

ricki lake is a fun loving person. I am sure it was a cute little mistake to mention anything about Type 1. I am sure she is sorry. It was just a cute little mistake. Everybody makes those once in a while. :slight_smile: