I think that most people have at least some awareness of eating disorders, specifically bulimia and anorexia nervosa. Mostly because it’s pretty widespread. I’m sure that all of us know at least one person who is close to us who at one time in their life sufferred from one of these conditions. And I’m pretty sure that the reported incidence is far lower than the actual incidence.

My sister, a well-educated and intelligent woman, can now acknowledge that some of her behaviors with regards to food or to her body image have been unhealthy. Mostly, what woke her up was her roommate in freshman year in college, who purged on a regular basis. But even though she recognizes that American culture’s expectations about women’s appearances is pretty damaging to the cause of equal rights, it’s not an easy thing to buck.

Thankfully, people are starting to wake up a little. The starved, emaciated look is not very cute, and even the fashion industry is being forced to start noticing. But the disease burden is still pretty significant, and I don’t think I recognized the extent of this pandemic until I started seeing it every day.

Patients with anorexia nervosa and bulimia are among the sickest people I meet. I’ve seen a few who look worse than people suffering from AIDS or metastatic cancer. These patients (mostly women, but there are indeed a good number of men) aren’t just thin. Their muscle mass is atrophied. They have absolutely no subcutaneous fat. They really look like the wind could break them. But what is most appalling is the fact that they continue to claim that they’re OK, and even more heart-wrenching, some still think that they are too fat.

There is typically a degree of mental illness at work. While extrinsic forces such as cultural expectations and the fashion industry don’t help the situation, there is something intrinsic that cooperates, and perpetuates the behavior. People with eating disorders will band together. Some claim they are being discriminated against for being skinny and having a fast metabolism. There are even websites out there on how to fool your doctor into thinking you are getting better while still continuing to avoid food and/or binging-and-purging.

There are so very few similar diseases that occur in someone who is otherwise healthy, who is intelligent and has great potential, which can end up ruining their lives and/or even killing them. If you get leukemia or you are infected by HIV, you generally recognize that something is wrong with you, and you seek appropriate attention, and you can get cured, or at least controlled. But behavioral illnesses like substance abuse and depression do the same thing as eating disorders—they take some of the best and the brightest and stop them from ever contributing positively to society. We are starting to be able to control some depression, and there is a lot of money being pumped into trying to curb substance abuse (although results are variable), but eating disorders have yet to get the same amount of focus and attention.

I guess Alisa has it right. We health professionals aren’t being trained well enough to recognize this pervasive disease. I am somewhat disturbed by how few seemed to care about Alisa’s situation, and how many seemed to promote somewhat inaccurate information.

It is generally recognized that both anorexia nervosa and bulimia can cause electrolyte imbalances, the most rapidly fatal being hypokalemia—a deficiency in potassium—which can precipitate life-threatening arrhythmias—irregular heart beats that may require defibrillation. But starvation and binging/purging can also have permanent effects on the heart, leading to a persistent condition known as long QT syndrome where you are prone to developing life-threating arrhythmias. And in some cases (in particular with refeeding) you can end up with heart failure. There also seem to be permanent changes to the lungs at least on radiographic studies—changes that are akin to what you would get from smoking 4 packs of cigarettes a day (one cigarette every 20 minutes!) for 30 years. Why this happens is not well known, but if you’re throwing up all the time, it’s foreseeable that some of that vomit can end up going back down the wrong pipe and into your lungs, causing some damage.

And throwing up all the time will cause esophagitis. Esophagitis, left untreated, will cause Barrett’s esophagus. Barrett’s esophagus can lead to esophageal cancer, which is a disease with a pretty poor prognosis. If it can be removed (which is an option in only about 30-40% of patients with esophageal cancer), it would generally involve cutting out part of your esophagus and then reconnecting everything together so that you can eventually eat again. Generally, they would want to cut into your chest as well as your belly—it’s a big operation that is fraught with possible complications. And if you only get surgery, your chance of being alive in 5 years is about 5-20% percent. So generally, you would also get chemotherapy and radiation.

This is when the cancer is potentially curable. And a huge percentage of these patients eventually have recurrences. Meanwhile, the 60-70% of patients who have non-resectable disease are pretty much doomed, although they will do surgery/chemo/or radiation if you can’t swallow and/or breathe and are well enough to undergo some kind of procedure.

But esophagitis and even Barrett’s esophagus will regress—if you take your medications religiously and stop throwing up. So Barrett’s esophagus is not necessarily a death sentence.

But, yeah, we have yet to invent anything that will cure GERD. For many of us who have it, H₂ blockers like Zantac and Pepcid or proton-pump inhibitors like Prilosec can make it bearable, and keep us from running into any of the horrific complications listed above, but it probably won’t ever go away. Some people who have it bad enough may opt to get a fundoplication—surgeons can take your stomach and wrap it around the esophagus so that stomach acid can’t reflux out, but these are not fool-proof and can fail, and you have to be extremely careful about eating. Sometimes they also do a vagotomy, where they cut one of the nerves that help control your gut, so that it doesn’t stimulate your stomach to produce acid. But this does have its side-effects.

GERD and esophagitis can cause horrific substernal chest pain that may be easily mistaken for a heart attack. What is even worse and quite possibly fatal is the possibility of esophageal rupture, which is something I would be concerned about if you told me you just ate a big meal, threw up, then heard a pop, and now you’ve got excruciating chest pain.

But recovering from an eating disorder is a long, hard road that requires a lot of support. And it’s something that can come back time and again. I hope that Alysa can find a health care professional that is well-trained with dealing with eating disorders.