"Flesh eating Bacteria in U.S. attracting more Media attention

Advocate: Story of rare bacterial infection raising awarenessBy Tom Watkins, CNN
May 18, 2012 -- Updated 0307 GMT (1107 HKT)
The necrotizing fasciitis cases of Lana Kuykendall, left, and especially Aimee Copeland have garnered unusual media attention.STORY HIGHLIGHTS
"Oh, how tragic, another case!" says co-founder of the National Necrotizing Fasciitis Foundation
"I get e-mails about these cases every single day," says Jacqueline Roemmele
Roemmele says she hopes the coverage will result in faster diagnoses, saving limbs and lives
A Texas man says that unlike his bout with infection, the Copeland case is getting attention
(CNN) -- A co-founder of the National Necrotizing Fasciitis Foundation said Thursday that she felt sorry for the young woman diagnosed with rare "flesh-eating" bacterial infection when she heard about her this week in media reports.

"First thing I thought when I saw the news was, 'Oh, how tragic, another case!'" said Jacqueline Roemmele in a telephone interview about the first report of Aimee Copeland, a 24-year-old graduate student at West Georgia University who had lost a leg and was expected to lose her fingers to the infection.

Though there is uncertainty about just how common such infections are since no clearinghouse compiles statistics on their incidence, Dr. William Schaffner, chairman of the Department of Preventive Medicine at the Vanderbilt University Medical Center, estimates there are fewer than 250 cases every year in the United States. The reporting of such cases is not required by law.

Flesh-eating bacteria explained

"I get e-mails about these cases every single day," said Roemmele, who noted that news coverage of such cases is far rarer than the infections themselves are. "If you look at our foundation and our Facebook page, there's discussion constantly among thousands of people, but it just isn't sexy for the media."

Still, this week's TV and print pieces about Copeland did not surprise Roemmele. "It was a cute girl that everyone can relate to," she said.



Battling flesh-eating bacteria

Second case of flesh-eating bacteria In addition, Copeland's relatives have made themselves available to reporters and her classmates have been vocal in their support.

Copeland 'in high spirits,' father says

"Every three or four years or so it happens, where a case will take off in the media," said Roemmele, who is based in northern New Jersey.

But Roemmele said she was grateful for the coverage, whatever the motivation. Not only has her foundation received a "substantial" increase in donations since the cases went public, but the stories may have some educational value.

If people seek quicker treatment next time they get a cut that results in a rapidly spreading infection, causes pain disproportionate to the size of the cut and is associated with flulike symptoms, then the goals of her group will be furthered, she said.

Group A streptoccal bacteria, the same bacteria that cause strep throat, are the main culprits, although -- as occurred in Copeland's case -- other bacteria can also result in the disease, known to doctors as necrotizing fasciitis, Roemmele said.

"You're fine when you go to bed at night, but you wake up in the morning with your leg twice the size and turning black and you have a 105 or above fever," she said. "I've known many, many cases where people have died within 24 hours."

Roemmele herself survived the infection.

"Eighteen years ago, I had a surgery on my abdomen after a C-section for my twins," she said. "By the time they finally found out what was wrong with me, my flesh was falling off in the nurse's hands."

South Carolina woman 'very ill, but stable'

After recovering, she and a fellow survivor founded the website. In the 12 years since, tens of thousands of people have told their stories on the site about the disease, she said.

"I'm happy to see that it's again getting some attention," she said. "The biggest problem we have is missed diagnosis. That's huge. So, if somebody goes into the ER, invariably they're turned away. By the time they go back, they've reached the advanced stages of the disease and they're either losing limbs or losing their lives."

That comes close to describing what happened to Dan Coogan.

In 1995, the 41-year-old triathlete was gardening in his yard outside Dallas. As he set about transplanting a tree, he lifted its 2-inch trunk, which was attached to a 2-foot-wide root ball. "One of the roots poked me in my calf, and I didn't even know it," he said. "Within an hour, I felt like I had a Charlie horse. By the end of the day, I was vomiting all the time. I felt like I had the flu. I had a fever. I went to bed sicker than a dog."

A few hours later, at 4 a.m., his house was struck by lightning and caught fire. As firefighters arrived and extinguished it, "I could barely walk around because of the pain in my leg," he said.

He went back to bed, in worsening pain. "I just started popping a lot more painkillers."

At 10 a.m., with his cut growing fiery, he went to a small regional hospital in nearby Lewisville. "They checked me in and didn't do anything for two days" except administer antibiotics, he said.

By then, "this thing had taken over the backside of my leg and was more than halfway up my thigh."

His luck turned when a friend, who happened to be a surgeon, recognized that something was awry and arranged for his transfer to another hospital, where doctors immediately recognized the symptoms. "Within an hour of checking into that hospital, I was in surgery," he said.

Each night for nearly two weeks, he underwent operations that included removal of the infected tissue and dead flesh.

"They told me every night for nine nights that they were going to take my leg off," he said. But one of the doctors put it off, saying "I'm going to take a chance here," he recalled.

"She was right, thank goodness. I made it through all the surgeries and debridement (tissue removal) and living on morphine for 2½ weeks ... I was able to survive the whole thing and I walked out of the hospital."

But his case, like most of the others he had learned about, generated no interest from the news media.

"The people who get it aren't 24 and grad students," he said, referring to Copeland. "And she's got a community of other students. ... The press has kinda glamorized this one."

(CNN)-- Lana Kuykendall has been fully conscious for all but a few days of her not-yet-3-week-old twins' lives. And after seven surgeries thus far to tackle a rare flesh-eating bacteria, the South Carolina mother's family realizes all too well that she "still has a long road ahead."

"We don't know what the next day is going to bring, so we're just trusting the Lord," her brother Brian Swaffer said Sunday. "We're taking it one day at a time."

Her twins, Ian and Abigail, are being cared for by family and friends as their mother battles necrotizing fasciitis at Greenville Memorial Hospital. Their uncle told reporters from outside the western South Carolina hospital that both babies are "doing great."

"They are healthy and doing well," Swaffer said.



Battling flesh-eating bacteria

Copeland on amputations: 'Let's do this'

Conn. man survived flesh-eating bacteria They were born May 7 in Atlanta. At that time, Kuykendall was healthy but, a few days later, she went to hospital near her South Carolina home after noticing a rapidly expanding bruise on her leg, her husband Darren, a firefighter, told CNN last week.

Since going to the hospital on May 11, Kuykendall has been "intubated and sedated," her brother said.

"She does respond sometimes, you can see in her blood pressure. She has opened her eyes a little bit at times," said Swaffer, who has been going back and forth from his sister's side to his home in western North Carolina. "But that's pretty much it."

Kuykendall's health is precarious, though Swaffer expressed gratitude Sunday it appears confined to her legs and has not affected her internal organs.

That is unlike Aimee Copeland, a 24-year-old graduate student at the University of West Georgia suffering from the same disease. She has already lost a leg, part of her abdomen, her remaining foot and her hands, according to online posts from her father, Andy Copeland.

Swaffer also gave thanks Sunday for the support that his sister, a paramedic, has gotten from fellow relatives, friends and the community, as well as medical staff.

He pointed to two efforts in particular -- one by fellow EMTs called "Loops for Lana," selling navy blue and green bracelets, as well as a fundraiser ride by the South Carolina chapter of the Knights of the Inferno Firefighters Motorcycle Club -- to raise money for Kuykendall and her family.

"So many people in the community have rallied behind her, and we're so thankful for that," Swaffer said.

The condition that Kuykendall and Copeland are facing, necrotizing fasciitis, is rare. Dr. William Schaffner, chairman of the Department of Preventive Medicine at the Vanderbilt University Medical Center, estimates that fewer than 250 cases occur each year in the United States, though such estimates are imprecise since doctors do not have to report the cases to health authorities.

Caused by a number of bacteria, the disease attacks and destroys healthy tissue and is fatal about 20% of the time, according to the Centers for Disease Control and Prevention.

The responsible bacteria are common in the environment, though they rarely cause infections. When they do, the body's immune system is almost always able to fight them off, according to experts.

Occasionally, however, the bacteria find their way into the bloodstream -- either through a cut or an abrasion.

In such cases, doctors typically move aggressively to excise even healthy tissue near the infection site in hopes of ensuring none of the dangerous bacteria remain.

'Aimee Day' milestone arrives for Georgia woman fighting flesh-eating bacteriaBy the CNN Wire Staff
May 28, 2012 -- Updated 1032 GMT (1832 HKT)
Aimee Copeland, left, poses with her mom, Donna; dad, Andy; and sister, Paige, in an undated family photo.STORY HIGHLIGHTS
Aimee Copeland was diagnosed with necrotizing fasciitis earlier this month
She's had her hands, leg, part of her abdomen and her remaining foot amputated
Her father was looking forward to "Aimee Day," when his daughter would talk again
(CNN) -- "Today... May 27... ...is AIMEE DAY!!!"

With those words, Andy Copeland celebrated -- and invited thousands who have followed his family's struggles thanks to his online posts to join him -- a major milestone for his daughter Aimee, as she gamely battles a potentially deadly flesh-eating bacteria.

Two weeks ago, Andy Copeland wrote on his Facebook page that the family was anxiously looking forward to a special day he dubbed "Aimee Day," when his 24-year-old daughter could not only breathe on her own but also talk for the first time in weeks.

"We're going to celebrate that day forever for the rest of your life," Andy Copeland said he'd told his daughter, as she lay heavily medicated in a bed at Doctors Hospital in Augusta, Georgia. "It's the day that my daughter was delivered from this horrible, horrible disease."

Father: 'I have never seen such a strong display of courage'

In recent weeks, surgeons have amputated Aimee Copeland's hands, part of her abdomen, one of her legs, and her remaining foot in their effort to stay ahead of the disease.



Understanding flesh-eating bacteria

Surviving flesh-eating disease

Copeland on amputations: 'Let's do it' Amid all these operations, there has been reported progress. Last week, for instance, the Georgia woman "finally stabilized to the point that she has not needed any ventilator assistance for over 24 hours," her father said.

Yet while she had joked and mouthed words, it wasn't until Sunday that Aimee Copeland's voice was heard again -- meaning the new holiday can now be etched into her family's calendars for years to come.

"Today Aimee has finally spoken her first words," Andy Copeland wrote succinctly, promising more details later.

His daughter was with friends on May 1 near the Little Tallapoosa River, about 50 miles west of Atlanta, when the zip line that she was holding snapped. She fell and got a gash in her left calf that took 22 staples to close.

Three days later, still in pain, she went to an emergency room, and doctors eventually determined she had necrotizing fasciitis caused by the flesh-devouring bacteria Aeromonas hydrophila.

Advocate: Story of rare bacterial infection raising awareness

Her father has written regularly since about her situation, with over 72,500 "likes" on his Facebook blog devoted to Aimee's fight. And the psychology department at the University of West Georgia -- where Aimee has been pursuing her master's degree in psychology -- also posted regular updates online.

A number of bacteria, which are common in the environment but rarely cause serious infections, can lead to the disease. When it gets into the bloodstream -- such as through a cut -- doctors typically move aggressively to excise even healthy tissue near the infection site in hopes of ensuring none of the dangerous bacteria remain.

The disease attacks and destroys healthy tissue and is fatal about 20% of the time, according to the Centers for Disease Control and Prevention.

Dr. William Schaffner, chairman of the Department of Preventive Medicine at the Vanderbilt University Medical Center, estimates that fewer than 250 such cases occur each year in the United States, though estimates are imprecise since doctors do not have to report the cases to health authorities.

Since Copeland's struggle came to light, there have been reports of others fighting the same disease.

They include Lana Kuykendall, a South Carolina woman also diagnosed earlier this month, a few days after giving birth to twins. She has had at least 11 "debridement surgeries" but thus far no amputations, with her brother Brian Swaffer noting late last week that the disease is confined to his sister's legs and she, too, is breathing on her own.