“We have some very successful people in the business world with narcolepsy who are holding jobs and very well paid, very well respected,” Honig says. “But they’re very well controlled with medications and their lifestyle. You can have a very good life, but you have to find the right ways to deal with your disorder.”

This may well be true for Olsson. Though the disorder has surely had a profound affect on her life, photos that accompany the article show her participating in dance class, showing off her artwork, and putting on makeup — as well as, of course, the obligatory shots of her falling asleep in front of the television and napping in bed.

They indicate that Olsson has been able to keep up some semblance of her pre-diagnosis life, though that’s never mentioned in the article. Rather, “Emelie just wants to make the best of her life.” She takes drugs now to try to control her condition, but we’re never told how well they work for her. She is — understandably, considering what may have caused her condition in the first place —“uncomfortable” at the thought of having to take medication for the rest of her life, knowing full well that it may well come with side effects.

The only sense of anything resembling hope in the article is in this quote from Olsson: “In the beginning I didn’t really want to live any more, but now I have learned to control things better.” Basically, the best a person with narcolepsy can hope for is to “control things better” and not be suicidal. That’s a pretty bleak picture.

Asked about the hopeless tone of the article, Reuters spokesperson Barb Burg gave this statement:

We believe our story focusing on the links between narcolepsy cases in children in Europe and GSK’s swine flu vaccine was accurate and fair. In our story, we described the symptoms experienced by one individual suffering from narcolepsy to show why the vaccine is now under scrutiny.

We understand and agree that others may experience less-severe symptoms — though hers are far from unique. Our understanding from experts dealing with the cases linked to Pandemrix is that a common feature is that many have developed relatively severe symptoms quite swiftly.

That last point is important: Olsson may well be an accurate representation of the children whose cases are linked to Pandemrix, just not necessarily all people with narcolepsy worldwide. It’s a shame Kelland didn’t make this distinction.

“There’s not much hope in this article, and that’s wrong,” Honig says; “The facts are true, but you can do a lot to learn to live with it, and to live a full life with it.”

The best chance to do that is in getting a diagnosis and treatment as close to the disease’s onset as possible, but the average time from onset to diagnosis is between seven and 14 years. Frequently, that’s because the public and even many doctors aren’t completely aware of what narcolepsy is. Articles that fully explain it help increase awareness. That’s why it’s so important to get them right.

 

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Sara Morrison is a former assistant editor at CJR. Follow her on Twitter @saramorrison.