Routine Sinus Infection Leads to Rare Disease: Mucormycosis

Mucormycosis

Sue Carlisle has served nearly 2,000 people since she started her catering business about a year ago. She's passionate about her work, and bookings are up. There's just one issue: She can't taste her food.

"I joke that I'm going to write a book," Carlisle said. "It's going to be called, 'The Caterer That Can't Smell or Taste Her Food But People Love it Anyways.'"

It all began in October of 2006 with what she thought was a routine sinus infection. It wasn't her first one and, in the past, her doctors had prescribed powerful steroids to kill the infections.

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According to Dr. Raquel Redtfeldt, Carlisle's ear, nose and throat doctor, her immune system was so weakened by repeated steroid use that an ordinary fungus, commonly found in everybody's sinuses, grew into something far from ordinary.

The 49-year-old from Maricopa, Ariz., was diagnosed with a rare and deadly infection in her face called mucormycosis, which led to the total loss of her palate. Now her taste buds are severely weakened and so is her sense of smell.

"This is a medication-caused horror," said Redtfeldt. "People who have this generally don't survive it."

An Unlikely Patient

Mucormycosis is usually only seen in people with severely weakened immune systems, such as AIDS patients, or those with uncontrolled diabetes.

Every year there about 1.7 incidents of invasive fungal infections per one million people, according to Redtfeldt. Ninety pecent of those are bone marrow transplant patients and 9.8 percent are poorly controlled diabetics.

Carlisle, Redtfeldt explained, was a very unlikely patient -- the probability of her both having the infection and surviving it was .085 in a million.

Redtfeldt said patients have two or three days, at most, before the infection gets into their blood stream and into the brain. But Carlisle's case was different.

"For whatever reason, [the infection] just stayed where it was," Carlisle said.

Carlisle's face soon became swollen and infected. Redtfeldt said she smelled of dead skin. The smile she had for more than 40 years was no longer the same to her young daughters, friends and even to herself.

"Some people didn't know how to react," she said.

"'My cheek kept expanding, and then my face got puffier, where all I could do was just put in a baby spoon," Carlisle said. "I couldn't open my teeth or open my mouth that much; and then one morning I woke up and my cheek had literally exploded." Her swollen cheek had burst, leaving a crater.

Mucormycosis Survivor: 'Half My Face Was Going to Be Gone'

At the time, the most recommended option to beat the infection was to completely remove Carlisle's right cheek all the way up to her eyelid. Hours before she went in for surgery, a doctor showed her a picture of what she might end up looking like.

"Half of my face was going to be gone," Carlisle said. "So two hours before the surgery, I'm going in thinking, OK, I'm coming out without a face."

Carlisle worried that she'd never taste her own food again. She knew that without a large portion of her face, her quality of life would change forever. So she refused to undergo the invasive surgery.

"I did not want to stare at my two young girls looking like that, and I would have no quality of life," Carlisle said.

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