July 26, 2009
Lyme Rally in South Carolina Makes History
A crowd of nearly one hundred people experienced history in the making earlier this year, when South Carolina Lieutenant Governor Andre Bauer delivered the keynote address at the Lyme Disease Rally held May 14 on the steps of the State Capital in Columbia.
"I was very thankful for Andre Bauer's speech, which shed light and lent credibility to the seriousness of Lyme disease," said rally co-organizer Kathleen Liporace. "In a state where DHEC has recorded so few cases, this is a victory for the many who actually suffer from this disease in the great state of South Carolina. It was a first for our state and a history-making rally."
The rally, which was organized by Greenville Lyme Disease Association and South Carolina Lyme Advocacy, came on the heels of Gov. Mark Sanford's proclamation that officially recognized May as Lyme Disease Awareness Month throughout South Carolina.
In his speech to an enthusiastic crowd that attended the State Capital rally, Bauer acknowledged that a disproportionate number of Lyme disease cases go unreported, resulting in misleadingly low numbers on record. Transmitted by ticks, the number of Lyme disease cases in the United States has doubled since 1991, with at least 27,000 new cases reported each year. But because of inaccurate tests and underreporting the actual numbers may be up to 12 times higher, according to the Centers for Disease Control, making Lyme disease a national epidemic larger than AIDS, West Nile Virus, and Avian Flu combined. The CDC documents 241 confirmed cases of Lyme in South Carolina since 1990, but notes the disease is probably underreported by about 90 percent, which could skyrocket the actual number of cases to upwards of 2,400.
Bauer encouraged patients and advocates to bolster awareness of the disease by sharing their personal experiences, actively seeking out legislators and helping them to become more informed about the issues surrounding Lyme.
"They need to know how you've been effected," Bauer told the crowd.
Indeed, at one point during his comments Bauer struck a chord of empathy on a personal note with patients who suffer from Lyme disease, referencing an unspecified and temporarily debilitating illness that he had battled through a few years ago and overcome.
"The lieutenant governor seemed to have a real sense of compassion for patients," Liporace said. "He really connected with the audience."
Bauer took extended time, both before and after his speech, to personally talk with and listen to Lyme patients who attended the rally. The interactions seemed to make an impression. During his speech, Bauer referenced a conversation he had earlier in the day with a patient who suffered from Lyme for nearly four years before being properly diagnosed.
"That's scary," Bauer told the crowd. "That really is."
That sentiment hit home, literally, with Dr. James Schaller, who spoke about the inadequacies of current testing for Lyme disease. Schaller related how tests repeatedly failed to detect Lyme in members of his own family. Schaller, who has authored several books on Lyme disease, implored the medical community, and society as a whole, to wake up to the realities of chronic Lyme disease.
"We are at a crossroads within the Lyme community," he said.
Events like the State Capital Lyme Rally, and legislative proclamations recently approved advocating for Lyme Disease Awareness, are steps in the right direction to help that crossroad become a turning point for improved patient care, according to Dr. Joseph Jemsek, whose Jemsek Specialty Clinic, located in Fort Mill, S.C., had a representative attend the Lyme Disease rally.
"Admitting there is a problem is a good start for finding a solution that will result in improved patient care," Jemsek said. "We're very appreciative of Gov. Sanford and Lt. Gov. Bauer's efforts to help raise awareness of Lyme disease. It speaks volumes about their interests and advocacy for good health for the residents of South Carolina."
Liporace, of the Greenville Lyme Advocacy and Support Group, said she hoped the rally would serve as impetus for increased and sustained awareness of Lyme disease.
"I am deeply grateful for all who were in attendance and blessed to work along side of Scott Seckman and Carol Black to make the event a reality," she said. "The rally has helped to bring much needed awareness to this state's people, physicians and politicians."