healthmedicinet

I’M in line at the supermarket holding three items close to my chest. But I might as well be juggling my Kleenex box, toothpaste tube and an orange. Because — as you’d surely notice if you were behind me in line — I‘m bent forward at a sharp angle, which makes holding things difficult. I know you don’t want to stare, but you do. Maybe you think you’re being considerate when you say, apropos of nothing, “You look like you’re in pain.” Well, thanks, I am — but I’ll resist replying the way I want (“You look like you’re having a bad hair day”). I’m sorry. I know you mean well. Anyway it’s my turn at the register which means I’m closer to being at home where I can lie down and wait for the spasms to subside.

Besides, if I told you what my issue was, you would probably shrug and reply that you’d never heard of it. There aren’t any public service announcements about it or telethons. No Angelina Jolies to bravely inform the world. Just people like me, in supermarket checkout lines.

And this, I realize, is at the core of a problem that extends beyond me and my condition and that affects the way all of us respond to illnesses, some of which are the subject of public attention — and resources — and some of which are not.

I have dystonia, a neurological disorder. Some years ago, for reasons no one knows, the muscles in my back and neck began to spasm involuntarily; the spasms multiply quickly, fatigue the muscles and force the body into repetitive movements and awkward postures like mine. There is no cure, only treatment options like deep brain stimulation, which requires a surgery I underwent last year as a last resort.

I was awake during the six-hour operation, during which doctors implanted electrodes in my brain with the hope that targeted electrical impulses would interfere with (and ideally block) the abnormal neural activity. I only half-understand it myself, but I do know it has begun to work.

I had never heard of the disorder until I was given the diagnosis in 2009, at the age of 30. “Dystonia.” Really? The word hung in the air for a second followed by the hardly encouraging suggestion from the doctors “not to Google it.” But that, I quickly learned, is a huge part of what I’m up against: No one is Googling dystonia. Few even know what it is. And by extension, there is not nearly enough being done to fight it.

I’ve spent a lot of time since my diagnosis wondering how we learn about certain diseases, and why some become part of the public conversation while others (like dystonia) do not. It’s odd to find yourself envying people who have diseases that get more attention than yours. But I can’t help it.

Dystonia is quite rare but, by some estimates, there are more people who have it than have Huntington’s disease, A.L.S. and muscular dystrophy combined. So the simple prevalence of an illness doesn’t explain why some illnesses are better known and better studied than others.

Dystonia isn’t fatal or neuronally degenerative, but this doesn’t explain the shadow it occupies in the public imagination either: neither paralysis nor traumatic brain injuries are necessarily fatal or degenerative but both are far better known. Dystonia is certainly, in its own unpleasant way, eye-catching. You would definitely notice something was up if you walked into a room full of people struggling with the disorder; in their neck and back, like me, or their throats (making their words sound strangled), or even eyelids (potentially causing functional blindness).

It’s hard to imagine that celebrity plays a big part in what we know about and what we don’t, but think about it: nearly every uncommon disease you’ve heard of is connected to a well-known person. So, maybe, whenever I hear about a celebrity who’s been given a diagnosis of a serious ailment, I’m not crazy for quietly hoping that it’s dystonia.

In fact, one of rare instances in which dystonia was mentioned in public conversation was on “Curb Your Enthusiasm” on HBO, when Michael J. Fox (who’s done as much for dystonia awareness as anyone in the history of the disease) played himself, as Larry David’s upstairs neighbor, disturbing Larry by stomping his feet every night because of the dystonia that comes along with his Parkinson’s.

“It’s called dystonia,” Mr. Fox told Mr. David. “It’s in my book. It’s chapter one. You should read it.” Mr. Fox has done similar “disease P.R.” for dyskinesia, another neurological movement disorder that he suffers from in real life, by playing a recurring character dealing with the ailment on “The Good Wife” on CBS. This fall, he’s coming back to TV full time with an NBC sitcom loosely based on his own life living with Parkinson’s.

In a 2003 study that examined (and named) the “Katie Couric Effect,” one of the co-authors, Dr. A. Mark Fendrick, who teaches at the University of Michigan, noted that “a celebrity spokesperson, even one without the condition he or she is promoting, can have a substantial and important impact on what the public does” with respect to particular diseases. There is likely to be an “Angelina Jolie Effect,” in the wake of the actress’s courageous essay about her decision to have a double mastectomy given her genetic predisposition to breast cancer. And BRCA genetic testing rates will probably rise, as will the number of preventive mastectomies.

Cancer is, of course, in its own league, but like less common conditions it dramatizes the way in which awareness matters. A lot. Awareness generates funding, and funding generates research, which can lead to enormous life-changing differences for people who struggle with illnesses you probably haven’t heard of. I couldn’t ask for a more dedicated, intelligent, empathetic group of doctors and scientists working on a cure for dystonia, but I can ask for more of them, more work and more research, which depends on more funding.

Long after “coming out” to my friends about my diagnosis, I realize now that what’s most important is telling people about the disease. Telling waiters why I’ve brought a special pillow with me to a restaurant; legislative aides who want to know what their bosses can do; and strangers who ask, almost rhetorically, if I am in pain.

It matters when those of us struggling with little-known illnesses keep talking and keep answering the puzzled expressions of people in grocery lines. We’re not celebrities, but we’re people. People hoping for help that’s not likely to come if others don’t know or understand what we’re experiencing.

Allison Hersh London is the chairwoman of the Young Leadership Council at the Bachmann-Strauss Dystonia and Parkinson Foundation.