Star News Group (05.03.07): Battle vs. Lyme disease intensifies

WALL TOWNSHIP Due in part to the tireless efforts of a township resident, a research center for Lyme Disease was officially opened Monday at Columbia University Medical Center in New York City.
With the weather beginning to get warmer and the hot summer months not far off, ticks which carry the disease will be coming out in full force, infecting thousands of people with the debilitating disease.
Unfortunately, the public is not educated enough about the disease, Pat Smith, 61, president of the national Lyme Disease Association said.

In an effort to properly educate the public, but also to test and provide cutting-edge research for Lyme Disease, her organization recently sought to raise enough money to open a research center at Columbia to study the disease and search for a cure.
That dream was realized this week when, on Monday, there was a special ribbon cutting ceremony for the grand opening of the Lyme Tick-Borne Diseases Research Center at Columbia University.
The New Jersey-based LDA and Connecticut-based Time For Lyme [TFL], which are affiliated organizations, partnered with Columbia in the development of this center concept and devoted a large percentage of their efforts and resources in the past five years to funding the endowment for the center.

People nationwide contributed to make the center a reality, Mrs. Smith said.
It is during the late spring through the end of the summer months that most cases of human illness from Lyme Disease occur, when the tiny nymphs are most active and human outdoor activity is greatest.

There are nearly four times as many reported cases of human infection during those months as compared to any other time of the year, Mrs. Smith said.
Ticks search for host animals while waiting on the tips of grass and shrubs and transfer to animals or persons who brush against the vegetation.

Ticks usually attach themselves in areas that are more hidden or hairy on the human body, such as the groin, armpits and scalp.
In the northeastern and north central United States, the blacklegged tick, or deer tick, transmits Lyme Disease.
Mrs.

Smith, who is a former president of the Wall Board of Education, said, When I started 20 years ago [doing advocate work on Lyme Disease], the deer tick wasn t in that many places, and it s everywhere now in the country.
Mrs. Smith originally got into advocacy work with Lyme Disease when she worked on the Wall Board of Education.

She said at that time, there were many students and teachers in the district being diagnosed with the disease, but there was not much information available on the disease.
The disease also hit home for Mrs. Smith, who has three daughters two of whom contracted Lyme Disease when they were children.

Her youngest daughter, who is now 29, was originally diagnosed with the disease when she was a student at the Intermediate School in Wall.
Her daughter missed four years of school due to the disease, and was able to attend school for only three hours per day during her junior and senior years of high school. She had to be home schooled during the time she was not well enough to attend.

Even today, 18 years after she was diagnosed, her daughter still suffers from the debilitating effects of the disease.
Mrs. Smith said, It was hard to determine exactly when [her daughters were bitten] because we used to pick ticks off them all the time.

The Smith s lived in a heavily wooded area of Wall Township and it was not uncommon for her daughters to come home with multiple ticks on them.
Her 29 year-old daughter was bitten at least twice prior to being diagnosed with Lyme s.
We didn t know the symptoms in the 1980s, Mrs.

Smith admitted, which is one of the primary reasons she is adamant about educating the public about the symptoms of Lyme Disease, so that people can get treated as soon as possible.
After returning to high school, where she excelled, her daughter was admitted into Johns Hopkins University.
I can still remember the day she got into Johns Hopkins and it was like, Wow!

She really beat this disease, Mrs. Smith said.
Today, her daughter is an editor at a successful medical journal which Mrs.

Smith believes is a testament to properly treating the disease.
Mrs. Smith eventually started the Lyme Disease Association in New Jersey, a nonprofit, volunteer group, but soon after decided it needed to be a national organization, to properly educate the public about Lyme Disease.

Her group was approached by the TFL to develop a program that could provide education and research into Lyme Disease on a much more grand scale, to really make a difference and to be able to provide research into chronic Lyme Disease.
Currently, testing for Lyme is only between 40 and 60 percent accurate, according to Mrs. Smith, and this is one of the primary reasons for developing the research center at Columbia University.

Over the course of five years, the LDA was able to raise $3 million, which was the endowment amount needed to open the foundation at the university medical center.
This center will serve as a national resource, providing pilot grants to researchers nationwide and focusing the latest scientific technology on helping to resolve the problems of chronic Lyme Disease.
Mrs.

Smith acknowledged that without the public support, the research center could never have become a reality.
New Jersey is third in the nation in [Lyme Disease] case numbers, yet there is very little awareness in the state, Mrs. Smith said.

With tick populations increasing every year, Mrs. Smith believes everyone needs to be properly educated as to the symptoms and effects of the disease.
Mrs.

Smith said Lyme Disease is often referred to as the great imitator, because its symptoms could be universal to just about any sickness, disorder or disease, including Attention Deficit Disorder [ADD] and autism. Children who have been bitten by a tick have been misdiagnosed with ADD and autism in the past, and treatment for Lyme Disease was delayed, thus the urgent need for a better diagnosis system, Mrs. Smith said.

It s a very difficult disease, Mrs Smith said, pointing out the age group of people most often diagnosed with the disease are children between 5-9.
The Center for Disease Control [CDC] reports that in 2005, 23,305 cases of Lyme Disease were reported in the United States, yielding a national average of 7.9 cases for every 100,000 persons.

According to the CDC, patients treated with antibiotics in the early stages of the infection usually recover rapidly and completely. A few patients, particularly those diagnosed with later stages of disease, may have persistent or recurrent symptoms. Longer courses of antibiotic treatment have not been shown to be beneficial and have been linked to serious complications, including death.

One of the main problems with Lyme Disease is that there are too many misconceptions about it, Mrs. Smith said.
Like many people who are diagnosed, her daughter had vague symptoms such as fatigue and muscle aches, which were not easily recognizable as Lyme Disease at first.

She didn t get diagnosed for a long time after she was bit, Mrs. Smith stated.
Though her daughter still suffers from bouts of fatigue related to the disease, other effects can include memory loss, speech problems, light sensitivity, chronic fatigue and muscle, bone and nerve pain.

Mrs. Smith could not stress her point enough: only through education and research can someone make a positive change in the fight against Lyme Disease. She will continue to seek grants and donations to fund the battle and will continue trying to educate the nation about the disease.

Her hope now is that the scientists, doctors and researchers at Columbia will be able to use their knowledge and skill to one day eradicate Lyme Disease.
on Battle vs. Lyme disease intensifies
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