Awareness worn on the wrist - Living with Lyme disease
Lance Armstrong's plastic yellow bracelets are everywhere. Television personalities and athletes alike don them in support of cancer research. Pink ones have surfaced for breast cancer research as well as army-green ones to support the troops. Now, one Orange teenager is helping to market a new colored bracelet while raising awareness about Lyme disease.
Lauren Berkley, a senior at Amity Regional High School in Woodbridge, is selling lime green bands as a way to raise funds for people with Lyme disease, which affects nearly one million people nationwide.
For Berkley, this fundraiser is close to the heart. She was diagnosed with Lyme Meningitis at age 14 and endured a period of uncertainty and painful testing to determine her diagnosis.
"I was in and out of different hospitals," said Berkley. "I missed a month of school. I had headaches, photophobia, vomiting and high fever."
Berkley underwent three spinal taps to determine exactly what she had. It was not until she visited a neurologist that Berkley learned she had Lyme Meningitis, which is characterized by stiffness in the neck and headaches.
Even now Berkley is still suffering from some of the side effects of Lyme disease.
"My memory was most affected," she said. "I have no short term memory and that makes school hard."
After all she has been through, Berkley decided she wanted to prevent others from having the same experiences she had. So, two years ago she joined with her doctor and others in the health care industry to form Live with Lyme, a non-profit organization for patients with Lyme disease.
"There's a lot of stuff people don't know about it," said Berkely. "It's important here in Connecticut because it's up and coming."
According to Dr. Amiram Katz, Live with Lyme's medical advisor and an assistant clinical professor of neurology at Yale University, the numbers in Connecticut are staggering.
"In 2003, there were 5,000 reported cases," said Katz, "That's only 10 percent of the cases that are diagnosed, which means there is an incidence of 50,000 for the state."
Furthermore, Katz, who has a private practice in Orange, said that only half of the cases of Lyme disease are diagnosed, making the true number of cases in Connecticut nearly 100,000. One reason for the lack of diagnosed cases in the state is that Lyme can often go unrecognized.
"Nearly 50 percent of the subjects wouldn't notice a tick bite or rash," said Katz. "Therefore, Lyme goes undiagnosed."
While a tick bite or a rash can be easily noticed and identified, people may not be aware of Lyme disease's myriad of other symptoms. These include rash, pain and stiffness in the joints, memory and sleep disorders, twitching, irregular heartbeat and swollen glands among others. If left untreated, Lyme disease can cause even more severe problems.
"In the late stages, Lyme can have serious neurological effects," said Katz. "It can turn into a neuro-psychiatric disorder and can cause seizures, depression, anxiety and psychosis."
Live with Lyme, which is located at 291 S. Lambert Road in Orange, is trying to educate people on these very serious side effects. The group is also trying to enlighten the health insurance industry on the treatment of Lyme and the need for coverage by insurance companies.
"The treatment for Lyme, IV and antibiotics, are very expensive," said Katz. "We are trying to help patients with diagnosis, treatment and medical research."
The money collected from the sale of the lime green bracelets will go to defray the cost of these expensive medical treatments for Lyme disease which are not covered by insurance companies. In addition, proceeds will also help with the education and awareness of the disease in hopes of stifling the numbers of undiagnosed and unreported cases.
For more information about Lyme disease or to purchase a Live with Lyme bracelet, visit www.lymegreen.com or call the organization at 795-5645.