Batdorff and Roemmele heard from "tens of thousands" of survivors worldwide and are aware of at least 25 cases in which people were sickened more than once. Batdorff developed her infection while skiing in Colorado in 1996 but ignored escalating symptoms. She ended up unconscious in a hospital and woke up to her sister telling her that doctors had amputated parts of the fingers of her right hand.
One of the tricky things about necrotizing fasciitis, she said, is that "sometimes there's terrible, ugly, bulbous nasty blisters – you know there is something really wrong. But in my case, there was nothing that was really visual like that. No alarming visual signs."
Roemmele became sick in 1994 after an abdominal hernia repair that led to two hospitalizations. The ordeal left her with a hip that even today looks as if she suffered "a shark bite" as well as residual nerve damage in her fingers.
Batdorff says there are several practical considerations that can improve the odds of surviving the disease, starting with quick attention to what seem like minor skin openings: "When you get that paper cut, when you cut yourself a tiny bit with a knife, when a staple punctures your finger, when you prick your finger with a rose thorn -- the smallest, tiniest opening is an opening that bacteria can get into-- and it can kill you," she said. "The preventive is don't ignore these things. Go and wash it, put antibacterial ointment on it and cover it."
Second, she said, is recognizing that these infections can send out warning signs, including "pain that's disproportionate to the size and scope of the injury. And it's not just a little bit of pain, it's pain like you've never felt before." Other signs can be flulike symptoms, lethargy and even feeling delirious or buzzy. "That is the time when you need to get to the doctor. Just get to the emergency room."
Once in the emergency room, speak up. The symptoms often are mistaken for the flu, for brown recluse spider bites and "more people than I can ever begin to tell you about have been sent home to take antibiotics, or rest, or drink fluids ... and they come back the next day. Sometimes people are sent home a couple of times." Such patients often die "before someone figures out what's wrong with them."
"The problem is that necrotizing fasciitis behaves like a wolf in sheep's clothing," Roemmele said. "It masks itself as many things. The initial diagnostic tests like MRI or CT scan often won't show anything."
She said that many doctors have a mantra: "If you hear hooves outside your window, chances are it's a horse and not a zebra," meaning that you should first consider the obvious explanation. "Our point is, physicians need to be trained to look at necrotizing fasciitis as a horse and not a zebra."
If you suspect the disease, ask doctors to rule it out. Batdorff cited the case of "a gentleman whose wife said to the emergency room staff, ''could this be the flesh-eating bacteria?' They said no. And it was. And he died."