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Published: May 17, 2008 10:59 pm
Valley woman, her mother dedicated to educating public about meningitis vaccination
Ashley Lee stricken will disease while freshman at IU
By Sue Loughlin
The Tribune-Star
TERRE HAUTE —
Two-and-a-half years ago, Ashley Lee nearly lost her life to bacterial meningitis.
In September 2005, she was a freshman at Indiana University and had come home to Terre Haute for the weekend. She went to a fraternity party that Friday night, but some flu-like symptoms got progressively worse.
On Saturday, she went to a local hospital, and by early Sunday, she was fighting for her life at Methodist Hospital in Indianapolis, where a doctor diagnosed her with meningococcal disease, a serious, potentially fatal bacterial infection that strikes nearly 3,000 Americans each year.
“The prognosis they gave us was 50/50,” said Ashley’s mom, Sam Lee. “It was probably less than that. They were trying to be gentle. It’s God’s will that she is here today. You can die within hours of getting this disease.”
Ashley remained in the hospital for three months and also had about a year of wound care therapy.
She’s happy to be alive, but the disease took a toll. Ashley lost her left foot as well as three fingers on her right hand.
She’s had 17 surgeries, including several skin grafts. Her immune system is weaker, and she tires more easily. She also suffers from migraine headaches and lives with much pain from nerve damage, especially in her right leg and foot.
Meningococcal disease can take two forms: an inflammation of the membranes surrounding the brain and spinal cord, or the presence of bacteria in the blood. Ashley developed sepsis, or blood poisoning.
The disease can attack and shut down major organs and prevent blood from circulating to limbs, causing tissue to die.
Ironically, Ashley had tried to get vaccinated before she left for college, but the family doctor didn’t have it in stock. The Lees were reassured that meningitis is rare and that Ashley could get the vaccine at IU.
“That led us to believe it wasn’t that big a deal,” Sam Lee said. The family didn’t know much about meningitis.
When she went to college, Ashley got busy with school and never did get vaccinated. Within 11⁄2 months, she contracted the disease.
Now, Ashley and her mom are dedicated to educating the public about the easiest way to prevent the disease — through vaccination.
“We don’t want to see other people go through what we’ve gone through, and you can prevent this with a vaccination,” Sam Lee said.
Symptoms of meningococcal
disease
Ashley says the weekend she got sick, “I thought I had really bad flu.” Late Friday evening, she was vomiting every 20 to 30 minutes. She had a really bad headache and stiff neck; her entire body hurt. Before she went to the hospital, she got confused and “kind of delusional,” she remembers. Her legs became weak and started cramping.
On Saturday, she remembers falling to the floor, and her family took her to the hospital.
The Lees say it’s important to know the symptoms, which are difficult to diagnose because they are so much like the flu. “That’s exactly the way it was when Ashley got sick,” Sam Lee said.
Some of the symptoms of meningococcal disease include high fever; neck pain; headaches; sensitivity to light; and leg pain. The Lees thought their daughter was dehydrated when they took her to a local hospital.
There, Ashley was in severe pain and began to develop a purplish rash. Still, medical professionals hadn’t linked the symptoms to meningitis.
“My husband insisted we take her to Methodist,” Sam Lee said. “That saved her life … It’s imperative when someone has meningococcal disease that they’re started on antibiotics right away.”
A doctor at Methodist immediately recognized it as meningococcal disease. By the time Ashley arrived there, her body had swollen to nearly double its size and the rash had spread all over her body.
Doctors started her on super-antibiotics right away, which Ashley says saved her life.
A life-changing event
The disease has “definitely changed my life,” the 21-year-old said in an interview Friday. Sometimes, it’s hard to get out of bed, but other times, “I think it’s changed my life for the better … It’s changed my perspective on life and how I live life. I’m the same person, but it gives me a different perspective on what life’s all about.”
She tries to be optimistic, and usually she is, but the challenges are great. “I’m in pain constantly and I take pain medicine every day,” she said. The medicine has a side effect and gives her migraines, which she’s battled the past two months.
Even going up and down stairs at her home is exhausting and takes a lot of energy.
Her family and friends have been a huge support to her, she said.
Her dad, Tom Lee, gave her some advice: “You can get out of bed and deal with what the day has brought you … or you can get out of bed and mope around all day.
“I’d rather just deal with what the day has brought me,” she said. “It’s my life. I can’t change it. I’m just happy to be alive.”
This summer, Ashley is taking it easy, although she has returned to IU, where she is majoring in human biology and hopes to go on to medical school. “In some way, I want to help people,” she said at her Terre Haute home Friday.
She’d like to work with those who have some of the same disabilities she has, perhaps through dermatology or a related field.
She’s made several public service announcements for the National Meningitis Association to increase awareness about the disease and to encourage people to get the vaccination, especially those ages 11 to 18 and college freshmen who will live in dorms.
Ashley has spoken at both West Vigo and Northview high schools and hopes to visit more schools in the Terre Haute area.
In addition, she’s participated in an award-winning educational video called “Getting It: A Disease … A Vaccine.” The video features the stories of survivors and families affected by meningococcal disease and it is designed to help educate school communities and parents about the dangers of the disease and the importance of prevention. It is narrated by actress Glenn Close.
Promoting awareness and vaccination
One of the Lees’ goals is to let people know there is a vaccination for the disease. There are five strains of meningococcal disease and four of those strains can be prevented with the vaccination, Sam Lee said.
The Centers for Disease Control and Prevention (CDC) recommends meningococcal vaccination for all adolescents 11 through 18 years of age and college freshmen living in dormitories.
Anyone can get meningococcal disease, but adolescents and young adults are at increased risk for contracting it.
“People can be carriers and not get it themselves,” Sam Lee said. “If you get the vaccination, it keeps you from being a carrier, also.”
The Lees also emphasize other ways to prevent getting the disease.
College freshmen living in dorms are particularly vulnerable to the disease. Adolescents and young adults may be at increased risk for infection due to certain lifestyle factors such as crowded living conditions (residence halls, boarding schools or sleep-away camps) as well as sharing of beverages, utensils or other items.
Meningitis is contagious and is transmitted through air droplets and direct contact with infected persons (coughing; kissing; sharing utensils, drinking glasses, cigarettes, etc.).
Ways to help prevent spreading the disease include following good hygiene practices, such as washing hands, not sharing water bottles or other drinks and generally not transmitting or sharing items that have been in one’s mouth.
Sam Lee is a member of Moms on Meningitis, a public awareness coalition for the National Meningitis Association. She would like to spearhead local awareness efforts in Terre Haute.
She attends NMA seminars each year and learns more about how to raise awareness and influence legislation.
“Everybody in our family has had the vaccination and I do advise all people to get it,” Sam Lee said. Ashley also got vaccinated, even after she contracted the disease.
While it’s highly unlikely Ashley would get it again, it was highly unlikely she would ever get it to begin with, her mom said.
No one knows better than Ashley the importance of getting vaccinated. “It really does happen to anyone … It happened to me,” she said.
Ashley’s traumatic experience with meningococcal disease affected not just her, but family members, as well.
“You see a lot of families that struggle and don’t do well with it,” Sam Lee said. “I think we bonded. We’re a team and we did it as a team. We’ll continue to make decisions as a team and we’ll continue to be there for Ashley.”
Ashley credits the support of family and friends for helping her get through such a devastating experience. She also believes that “everything happens for a reason.”
Mother’s Day was special for Sam Lee and her daughter. “We know how close we came to losing Ashley,” Sam Lee said. Ashley knows she’s blessed to have such a supportive family and to have survived such a dangerous, often fatal disease.
“We’re very, very lucky,” says Sam Lee.
Sue Loughlin can be reached at (812) 231-4235 or sue.loughlin@tribstar.com.
About the National Meningitis Association (NMA)
NMA is a nonprofit organization established in 2002 and founded by parents whose children have died or live with permanent disabilities as a result of meningococcal disease. NMA’s mission is to educate families, medical professionals and others about bacterial meningitis and prevention approaches to the disease.
The Moms on Meningitis (M.O.M.s) coalition, part of NMA, is composed of nearly 40 mothers from across the country whose children have died or live with permanent disability as a result of meningococcal disease.
In Terre Haute, Sam Lee is a member of the M.O.M.s coalition.
The M.O.M.s program supports NMA in its efforts to educate parents, adolescents, young adults and surrounding communities about meningococcal disease and prevention approaches through local outreach and community efforts.
To help support the M.O.M.s in their message, NMA is distributing a national television and radio public service announcement this month to help educate about the disease on a national level. In addition, many of the M.O.M.s are already working closely with their local legislature to encourage the meningitis vaccine as part of statewide immunization requirements for junior high school students.
About Meningococcal Disease
Meningococcal disease, commonly called meningitis, is a serious, potentially fatal, bacterial infection that strikes nearly 3,000 Americans each year. Early symptoms of meningococcal disease resemble those of the flu and may include sudden onset of fever, headache and stiff neck. As the disease progresses, a rash also may appear. The disease is transmitted through air droplets and direct contact with respiratory secretions from infected people (e.g., coughing, kissing or sharing utensils, drinking glasses, cigarettes, etc.). Adolescents and young adults are at increased risk of meningococcal disease and account for nearly 30 percent cases in the United States. The majority of cases among adolescents and young adults are potentially vaccine-preventable. The vaccine is available for children, adolescents and adults ages 2 through 55 years.
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