Local girl raising awareness about Lyme disease

June 20, 2008 10:35:22 AM PDT
This is no laid-back summer for 13-year-old Rebecca Charen of Lansdale. She's planning fundraisers with her best friend. Some of the money they'll raise will go towards raising awareness about Lyme disease. Rebecca knows the cause well. She's been fighting the tickborne-illness for the past three years.She remembers getting a tick bite, but didn't make the connection when she first got sick a year later. "It all started with bronchitis," she said, adding, "Then I started having crazy symptoms like not being able to sleep, and not being able to eat, and dizziness."

Doctors went through a host of diagnoses, and treatments, but none worked. About three years later,she was diagnosed with chronic Lyme disease. "Not in my wildest dreams did I think Lyme disease," her mom, Theresa Charen said.

Her mom also said by the time Rebecca was officially diagnosed, her condition had gotten so bad,she needed a wheelchair to get around. She was also having frequent seizures. "The Lyme disease is in my brain," Rebecca said.

Rebecca's case is extreme. Most Lyme disease is easily treated. Still the Centers for Disease Control and Prevention reports about 20,000 new cases of lyme disease (mild and extreme) each year. Suburban sprawl, which puts us closer to deer and other animals carrying ticks may be one reason. Harriet Morton of the Montgomery County Health Department said, "We're encroaching on the deer's habitat so the deer may be in your back yard."

But even as we see more cases of Lyme disease, cases like Rebecca's are sparking controversy specifically about chronic Lyme disease, how it's diagnosed and how it's treated. Some Lyme disease experts believe many cases of Lyme disease are missed. They say only half of patients will get bulls-eye type rash that indicates the disease. The CDC says more than 75-percent get the rash.

There's also argument about long-term antibiotics and whether they help or hurt. Rebecca said even with her treatment, recovery has been difficult. "I have these personality changes where I act like I'm drunk, and I don't remember it when I'm done," she said.

But she's turning a negative expercience into a positive one . Rebecca spends hours pressing for more research and awareness. She's launched her own website and has videos on 'YouTube.'

"I want to help other people who have this disease, so that they know it will be okay," she said.

Doctors at the Infectious Disease Society have agreed to review the guidelines on chronic Lyme disease-- what constitutes a diagnosis and how to treat it. This comes after pressure from patients like Rebecca, and a lawsuit filed by the Connecticut attorney general.

To protect your kids, check them for ticks after they come in from outside and if you have a swingset keep it as far as you can out of the woods, grass or brush.

To prevent tick exposure, wear long pants and tuck them into your socks in tick-infested areas and use tick repellant.