Video: Fight of her life

By Health writer
updated 9/5/2007 8:06:10 AM ET 2007-09-05T12:06:10

Ashley Lee thought it was just the flu coming on. A little headache, an upset stomach — nothing to skip a hometown frat party for, reasoned the 18-year-old as she cruised the 90 miles from Indiana University in Bloomington back home to Terre Haute, Ind.

But at the party, the college freshman ran to the bathroom to vomit every half hour and eventually headed home, where her parents figured she’d feel better after a good night’s sleep. The next day, she collapsed on her way to the bathroom. Her dad carried her to their car, and they sped toward the local hospital. At the emergency room, she lost her vision for several terrifying seconds.

“That scared me half to death,” Ashley says. “I knew something wasn’t right.”

Hours later, Ashley was diagnosed with meningococcal meningitis, a rare but potentially deadly bacterial infection.

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The doctor’s words hit Ashley’s stepmom with a sickening thud. Sam Lee had taken her daughter to the doctor just six weeks earlier to get vaccinated against this very disease before sending her off to college. The doctor didn’t have it in stock right then. It’s such a rare disease, though, he had said, that Ashley could just get the shot once she got to campus.

Statistically speaking, the doctor was right.Meningococcal meningitis strikes fewer than 3,000 people in the United States each year, many of them college students or children under age 1.  But while the bacterial infection is relatively rare, it’s also deadly, killing 10 to 12 percent of those it infects, sometimes within hours. The disease attacks and shuts down major organs and prevents blood from circulating to limbs, causing tissue to die. Among survivors, 20 percent suffer brain damage, kidney disease, loss of hearing or sight, limb amputations or other severe complications.

The disease is spread through air droplets and direct contact with someone who is infected. College students, particularly freshmen living in dorms, are at increased risk because of their lifestyle. They’re living away from home for the first time and many share everything from drinks to drags off each others’ cigarettes. And too many late nights of studying and partying can leave their immune systems run-down and vulnerable.

A look at how bacterial meningitis attacks our bodies

During her first weeks of college in 2005, Ashley was too busy with new friends and a full class schedule to seek out the vaccine, and it didn’t seem like a big deal anyway.

“I just didn’t know the severity of it. I thought it was just, like, another vaccination,” Ashley recalls.

It wasn’t until Ashley’s dad told her that the doctors were going to have to take her left foot that she truly understood what meningitis meant.

Life and death debate
After the disease attacked Ashley, each of her family members was vaccinated with Menactra, which is approved by the Food and Drug Administration for those ages 11 and older.  It’s 83 percent effective in preventing four of the five strands of bacterial meningitis.

“Why would you take the chance?” says Sam Lee.

That’s a question that has sparked a national debate.

Twenty states now require college students to either get the vaccination or sign a waiver that says they’ve read about the disease. Three more states mandate the vaccination for college students, but allow exemptions for religious or medical reasons. Eleven states require only that information about the vaccine and the disease be provided on campus.

A growing grassroots movement is pushing for more states to require the shot. Currently, the Centers for Disease Control and Prevention recommends Menactra for kids ages 11 to 18, but only 12 percent of teenagers got the vaccine in 2006.

Map: Meningitis cases 2002-2006

Many of those advocating for mandatory vaccinations are parents, including Frankie Milley, who have lost children to meningitis. Nine years ago, her 18-year-old son, Ryan, died of the disease, and since then, she has worked in her home state of Texas to make meningitis education available to all families. She also supported a bill currently being considered by the Texas Legislature that would require college students to get the vaccine.

After visiting her son’s grave recently, Milley wept during a phone interview. Her memories of her only child are intertwined with regret and anger. When Ryan was alive, she wasn’t aware of the vaccination that could have prevented the disease that killed him.

“The hardest thing was to walk to the cemetery, to see his name on a gravestone,” Milley says. “His name shouldn't be on a gravestone. It should be on a wedding invitation, a birth announcement. … If he'd had that vaccine he wouldn't be there.”

Dr. Jim Turner, the executive director for the department of student health at the University of Virginia, was skeptical in 2001 when Virginia passed a law mandating that all students attending four-year universities must get the vaccination or sign a waiver. He thought most students would just choose to sign the waiver. But it seems that education about the disease has motivated many to get the vaccine. He’s seen the numbers climb from 55 percent of students getting vaccinated to 95 percent.

“It’s a safe vaccination, it’s an effective vaccination, and it’s one of those terrible, terrible risks — albeit extremely rare — that you can really minimize by spending money on the vaccine,” says Turner, who is also the chair of the Vaccines Preventable Diseases Committee for the American College Health Association.  The vaccine is generally covered by insurance and costs around $120 on most college campuses.

Others believe parents should be able to choose which vaccinations they — or their children — receive. Education about the vaccination is vital, but families should know the risks and be able to make their own decisions, says Dr. John Dorman, a committee member of that same ACHA committee and a clinical professor of medicine at Stanford University.

Like any vaccine, Menactra may carry side effects such as allergic reaction and redness or pain around the injected area, according to the CDC. Menactra has also been linked to a few cases of Guillain-Barre syndrome, which attacks the peripheral nervous system and causes gradual, temporary paralysis. Data from the Vaccine Adverse Event Reporting System suggests this happens 1.25 times for every 1 million meningitis vaccines given.

Barbara Loe Fisher, president and co-founder of the National Vaccine Information Center, believes more attention should be drawn to these potential hazards. Her Washington, D.C.-based nonprofit works on the prevention of injuries and deaths caused by vaccinations.

“I just I don’t understand why we have to force people,” Fisher says. “We should make [vaccinations] available at low or no cost, but forcing people is another issue.”

A rare disease
Those opposed to a mandatory meningitis vaccination also cite the low occurrence of the disease in the United States.

“I guess I err on the side of wanting to make mandatory those things of major public health significance,” Dorman says. “(Meningitis) isn’t a particularly common phenomenon.”

But the disease can be horrific when it does strike.

When Lynn Bozof’s son Evan was a teenager, there was a meningitis outbreak in a neighboring county. Evan was worried, and he asked his mom if he should get the vaccination.

“‘Mom, how do I know if I’ve got meningitis?’” Bozof recalls her son asking. And she remembers her reply: “Oh Evan, you don’t need to worry about meningitis!”

But five years later, as a junior at Georgia Southwestern University in 1998, Evan called his mom complaining of a migraine. It got so bad that he went to the emergency room, where he was diagnosed with meningitis and placed in intensive care. His kidneys shut down. His liver stopped  functioning. Both arms and legs had to be amputated. After a 26-day fight against the disease, Evan died.

As Bozof watched her son’s losing battle, the memory of a teenage Evan asking about meningitis cruelly replayed in her mind.

“I feel like that came back to haunt me because I didn’t take the time to find out about the disease,” Bozof says. “Just because this disease is rare doesn’t mean it’s not going to affect you or someone you know.”

‘It happens so quickly’
The disease’s hard-to-spot symptoms and rapid progression make meningococcal meningitis a “great fear” for doctors, says Dr. Tom Clark, a medical epidemiologist for the CDC’s National Center for Immunization and Respiratory Diseases. The  symptoms are  devastatingly easy to overlook, to dismiss as something minor. The only way to definitively diagnose meningococcal meningitis is through a spinal tap, he says, something not routinely done on people who have flulike symptoms.

In Ashley’s case, the doctors at first assumed she was merely dehydrated and tried to send her home, the family remembers. Even after a purplish rash — a classic sign of meningitis — spread across her body, emergency-room staff still had no idea what was wrong.

Terrified for his daughter, Ashley’s dad, Tom, demanded that she be transferred to a larger hospital. Ashley screamed in pain the entire time it took the ambulance to get to the hospital in Indianapolis, 77 miles away.

“It was a ride from hell,” Ashley recalls.  “Now that I know about the disease, I could almost feel the disease running through my body, just eating at me.”

A look at how bacterial meningitis attacks our bodies

When she reached the second hospital, a doctor recognized the disease for what it was. By that time, Ashley’s parents say her whole body had swelled to twice its normal size, and the purple rash now covered her head to toe. The disease had taken only a little over an hour to overtake her entire body.

“It’s not unusual to hear a story of a kid not feeling well on a Friday night and going to bed, and being dead on Saturday morning,” says the CDC’s Clark. “It happens so quickly.”

Lingering effects
Even when a victim survives meningitis, the nightmarish battle against the disease is far from over. 

As Ashley fought for her life in the hospital, she and her father made the devastating decision to let her doctors take her left foot and three of her fingers.

They talked about it at length and cried about Ashley’s loss.  But when she woke up hours later, she had no memory of that conversation.

“She’d wake up after each surgery and say, ‘Dad, what happened to my foot?’ Tom Lee remembers. Brokenhearted, he would tell her again.

Now, two years after she got sick, 20-year-old Ashley’s right arm is scarred from skin grafts and she wears a prosthetic foot. Her other leg is in a cast, following the latest of 11 surgeries.

At home in her bedroom painted two shades of pink, pictures of her physical therapists sit among those of her friends and family. At first the therapists were skeptical about whether she’d be able to walk at all. But Ashley was determined to get back on her feet. Despite pain from the recent surgery and a pronounced limp, she refuses to even use a cane for support, walking instead entirely on her own.

Ashley spent last summer covering up the lasting marks of meningitis. Despite the sweaty, humid Indiana summer, she wore shrugs and pants to keep people from seeing her scars. But the following year when she returned to school, she made a series of bold moves: She put on a tank top. She had her seven remaining fingers professionally manicured.  And she started to tell her story.

She feels as if it’s her responsibility to educate people about the devastating effects of meningitis and to urge others to get the vaccine. She works closely with the National Meningitis Association and has appeared in an informational video the nonprofit group produced. On campus, where she’s majoring in biology in hopes of going to medical school, she plays the video and speaks to classes about her experience. And she’s fielded technical questions about her condition from crowds of doctors and researchers.

“It helps me; it's kind of like therapy for myself,” Ashley says.

She and her family still get angry at times, thinking about the vaccination that she nearly received, the vaccination that could have prevented all this. But she keeps her dad’s advice in mind: Every day we have a choice, he says.  Either look forward, or look back.

But telling her story over and over again can be draining for Ashley. Every time she walks a stranger through her story for the first time, she has to relive the pain, the ambulance ride, the surgeries and every detail of her nightmarish experience yet again. But it’s worth it, she says, “even if I can save just one person.”

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