The 1 in 20 Project

Eating disorders, we are told, are either freakishly rare (how many of us have seen a physician that said, "I've never dealt with one of you before") or exceedingly common (take, for example, the blog "Every Woman Has an Eating Disorder"). The fact is, they are neither. They are more common that you might think, but that doesn't mean that the majority of the female population can be diagnosed with an eating disorder.

I have a Master's in Public Health, which means (among other things) that I am a data wonk. I love numbers, statistics, tangible information. The autism community has made great success of this with their 1 in 110 and 1 in 88 campaigns. Check out this ad that aired earlier this year in the US:

The thing is, eating disorders have no real data and certainly no public awareness campaign to match this. So I thought I would look into it a little more. Using data averaged from this 2007 study (it was the largest sample size and broke down the data the best), I calculated that roughly 5 percent of the US population will meet the criteria for an eating disorder during their lifetime.

Think about it this way: that's 1 in 20 people. The autism community has 1 in 88 and everyone is up in arms and worried. This isn't a competition--suffering isn't increased or decreased by the among of people suffering--but it is something to make you sit up and take notice.

Let me break it down to you differently.

Each year, roughly 4 million babies are born in America.
Approximately 200,000 of these babies will develop an eating disorder.
Every year has 525,600 minutes.
That means that every 2.6 minutes, a child will be diagnosed with an eating disorder.
Every two minutes, a parent will be told "Your child has an eating disorder."

That's what 1 in 20 means. Think about it.

It's why I've decided to start the 1 in 20 Project, to raise awareness of the prevalence and devastating effects of eating disorders, as well as raising awareness about the latest research and the importance of early intervention.

I would love it if you would share the little graphic I created below, with a link back to this page, that would be great. (I'm working on figuring out how to do one of those grab 'n share graphics that you can easily embed in your website or blog--if anyone can help, please email!). As well, if you have any ideas, please email them to me.


{{One of my readers notified me that I had done the math wrong on my initial calculation. I corrected the numbers above.}}

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Anonymous said...

I think you should make T-Shirts. I would just put 1 IN 20 on it. That way people can ask what it means. I would buy one and wear it.

Lauren Ashley Tipton said...

thank you thank you thank you for doing this!! people really do believe in the extremes when it comes to prevalence rates of EDs and it's time they were challenged with a visible campaign! you ROCK. Lauren Ashley Tipton

Anonymous said...

What a fantastic campaign! Tshirts or wristbands would be awesome!

Brittnie said...

What a great idea. Would love to help spread the word. You should do tumbler/insulated cups... that seems to be all the rage these days.

Unknown said...

Isn't it crazy noone has done something like this before?! This is awesome. thank youu

Unknown said...

You could use You upload a picture and it gives you urls for different things like websites, forums, links, etc.

HikerRD said...

OMG this is fabulous (not the horrific stat, of course, but your brilliance in pulling the data together in way that has impact.) It certainly does raise an eyebrow when you see the to 1 in 20.

My only question is, is it better to say a "potentially" life threatening eating disorder? I am certainly not minimizing the risks of having an eating disorder, but many with eating disorders may themselves minimize it if the sense of life "threatingness" is not imminent. The quality of life issues and overall distress are themselves bad enough, even without it threatening life!

IrishUp said...

HikerRD - In medical terms "Life-threatening" is applied to any diagnosis, symptom, or condition where the risk mortality is considered high - particularly if untreated mortality is high.

This should not be confused with ALTEs - apparent life threatening events. These are situations where there is sudden respiratory arrest or obstruction, or acute severe cardiac or neurological abnormalities. One of the things that qualifies EDs as "life threatening" is that someone with active ED behaviors is at SUBSTANTIAL risk for ALTEs.

And let's remember that one of the real problems with EDs is that we (medical we as well as parental we) can't really tell when an ALTE is imminent. The way the body responds to the perterbations that ED behaviors subject it to, is to keep up homeostasis on vital functions for as long as possible, by pulling required resources from non-vital functions. And it keeps doing that until the biological reserve is used up. Which often doesn't show up on labs until the ALTE is already in process.

The acute elecrolyte imbalances from vomitting that can cause siezures and sudden cardiac death are another risk. You may not even be able to detect imminent events in a patient getting monitored daily.

LT is, of course, somewhat relative and subjective. When we are talking about somewhere between 0.6 - 1% mortality per year in a population whose expected mortality is 0.012%/yr, we are talking about GREATLY increased risk of death. When 10yr survival rates are less than that of (most) childhood leukemias, I think we can safely call EDs Life Threatening.

The fact that people don't react to ED the way they do to cancer is a huge part of the problem.

Anonymous said...

I am nowhere in the recovery phase of my eating disorder, but I hope to one day venture on that path. I enjoyed reading this blog entry because I was just talking to my husband about how there isn't a lot out there for eating disorder awareness. There especially isnt anything out there that helps with people suffering from eating disorders with no insurance or state insurance. The awareness of this illness needs to be recognized and hope needs to be given. I wouldnt wish this on my worst enemy. I hope to start a blog soon and hope it's okay to friend you, or however that works lol (:


Jen said...

I'm frustrated by my inability to figure out how to link to your fantastic campaign without instead getting the picture re autism. Help!
This is a wonderful answer to the discussion during the F.E.A.S.T. conference last November. Go with it!

Jennifer said...

PS - perhaps place the 1 in 20 photo at the top of the article so it appears when linked to your post?

Tetyana Pekar said...

OK. So, the sample size in that study is 2980. Seriously, that's not big enough to draw broad epidemiological conclusions. Secondly, that number includes BED, which isn't always considered in the same pool as AN and BN, and I think it makes the 1 in 20 very misleading, because I'd assume you were talking about AN and BN only. But more importantly, less than 3000 people, who were ASKED, what, they filled out a questionnaire? I'm not sure you can scale up from 3000 people, probably in the Boston area, to US, or Western countries as a whole. I didn't bother checking the location of the people they asked, but if it is places like Boston, then I'm sure rates of EDs will be higher there... it is a college-city, practically.

So, paper says 3.5% is BED (in women). So, really, it is 1.5/100, meaning 3 out of 200 for AN and BN. Of course, it is fine to include BED, I just think it has to be stated because it clearly outranks AN and BN combined.

Tetyana said...

I also think life-threatening is unnecessary. Overall SMR rates are around 1.5-1.8, of course they get way higher for BMI <11.5, and one in 5 deaths is a suicide (somewhere in that ball-park), so I'm not minimizing the mortality, but most people, an overwhelming majority, will not die from it. I don't like exaggerating facts or statements to make a case for why it is important. It is hugely important from just about any perspective you look at. But, I think "life-threatening" is somewhat misleading, it certainly can be. But my ED and I think most people's EDs have had a significant impact on their life, in so many different ways, as well as our health, without being life-threatening.

Autism groups have done a good job in this area, but, I'm not jealous of the amount of pseudoscience and straight up BS they have to deal with from all the charlatans and quacks.

The paper is also freely available here:

Anonymous said...

I truly hope 100% recovery is possible. It is a long and UNwinding road ahead for us ED'ers. Good to meet you! I found you through FIONA, a gifted and wonderful girl. I am now going to follow you. While bulimia doesn't define me anymore, i am still concerned that people do NOT GET WHAT ED's are ... nor do they care that that baby they're holding could end up in hell ... for a long time with a multitude of ED problems.

Melly said...
This comment has been removed by the author.
Melly said...

This is a great project! Thanks for starting it. :)

One thing that frustrates me, though, as a woman whose eating disorder did not become life-threatening until I was in my late 20s...1 in 20 does NOT mean that 1 in 20 parents will be told "Your child has an eating disorder." It does not mean that 1 in 20 children will be diagnosed. This ignores the very real and increasingly common (or at least increasingly commonly *recognized*) issue of adult women developing first time eating disorders.

We're often invisible as it is, and that aspect of your campaign perpetuates that, serving to reinforce the stereotype that eating disorders only affect tweens and teens.

Again, thank you for the campaign, and I don't mean to be negative, but I think it's really important to stop erasing the experiences of those outside the "typical" population of ED sufferers.

I would argue that there are a lot more adult women, boys/men, people of color, non-middle class folks suffering than we know about, because the stereotypes are so ingrained in our culture that lots of sufferers may not even realize that what they're experiencing is an ED.

Melly said...

Oh my goodness, and I just did it myself by saying "the issue of adult *women" developing first time EDs." Adult men develop them too.

See? Ingrained. ;)

wendy said...

This is a great campaign and certainly should wake people up about the impact it has on so many. T-shirts are a great idea with the numbers on the front and the other info on the back.
We will get it out

Anonymous said...

What a powerful campaign and way to promote awareness! It is time for people to realize eating disorders extend far beyond the emaciated models and celebs on tabloids! Eating disorders come in all shapes and sizes and the girl/boy down the street could be silently suffering. More research and awareness must be done. It took me so long to seek help because I feared my friends and family would never understand. I support your initiative 110% and would love to help in your efforts - just say the word!

Anonymous said...

Oh and I shared your blog and photo on my Facebook...hope you don't mind!

stopbeingstupid said...

I know this isn't the main point of the post, but a LOT of actual autistic people are hugely angry with Autism Speaks for all sorts of reasons (the main ones being that it has no autistic people on its board of directors, tends to listen to parents and ignore actual autistic people, promotion of abusive and pseudoscientific therapies and dismissing any autistic people who say they do not want a cure as being "too high-funtioning" to count.) I also think that comparing autism to eating disorders is irresponsible. It's a little like comparing being black or being female to an eating disorder. Autism is not intrinsically bad - what makes autistic people have worse lives than non-autistic people is that society treats autistic people badly. If autistic people were the majority and non-autistic people were the minority, the world would be set up for autistic people and not-autistic people would have a really hard time. However, whilst bad social attitudes make having an eating disorder worse, there is no possible universe in which having an ED would NOT suck. Even if you don't die or develop serious physical complications, having an eating disorder makes you miserable. Being autistic does not make people miserable -living in an autstic-unfriendly world while autistic does.

Agrace12 said...

Such a great [project. You are right, so few people really understand how many people this affects. We need more understanding and awareness.

Anonymous said...

Hi Carrie. I used to be a dedicated follower but lost your blog along the way. I recenly stumbled back upon it and have been reading since. When you did this ED-Awareness campaign you pushed me to write something I had been meaning to for quite a while. I therefore decided to partake. You can find my little contribution on my blog

Thank you for reminding me, and many others, how important it is to fight for this

The Anxious Foodie said...

I love this. I feel that people really don't understand how bad it is. They think you want to be thin and that's it. There's so much more. Like how I feel people always don't believe me when I say I'm anorexic because i don't look like a Skeleton - it is such a misconception that all anorexics look like this!
Please take this all the way. You have full support from all of us <3

Anonymous said...

sanabituranima already said everything I was going to say, so I just wanted to stop by as another reader who agrees.

Anonymous said...

I'm glad sanabituranima spoke up too. Autism $peaks is NOT the autism community. They promote eugenics and want to wipe autistic people off the face of the earth. They're the anti-autism community.

I'm autistic, but I only suffer from other (non autistic) peoples' shitty expectations. I do suffer from ED. Autism, unlike ED, is not a disease and should not be treated like one.

Anonymous said...

This is such a great awareness project, thanks so much for the stats and info! I'm putting up the link on my blog right now :)

iklan baris gratis said...

I really appreciate the project.

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I'm a science writer, a jewelry design artist, a bookworm, a complete geek, and mom to a wonderful kitty. I am also recovering from a decade-plus battle with anorexia nervosa. I believe that complete recovery is possible, and that the first step along that path is full nutrition.

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nour·ish: (v); to sustain with food or nutriment; supply with what is necessary for life, health, and growth; to cherish, foster, keep alive; to strengthen, build up, or promote


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