Brezden recognized for scleroderma advocacy
by Cindy AbolePublic Relations
Three years ago, Charleston Support Group President Rosemary Brezden began volunteering her time to support the Palmetto chapter for scleroderma patients and their families.
Rosemary
Brezden with the NSF's 2001 Messenger of Hope Award.
Less than two weeks ago, Brezden was honored at the group's national conference with the National Scleroderma Foundation's Messenger of Hope Award recognizing her efforts for bringing scleroderma awareness to the forefront in South Carolina.
“I was completely surprised to receive the award,” said Brezden, who was both humbled and honored at the June 24 awards dinner and presentation held at the Hyatt Regency Crystal City. “I don't look at the award just bearing my name alone. I believe I'm blessed to be in a position to help coordinate efforts for others. If it were not for the patients, volunteers and families there would be no South Carolina Chapter or collaboration with our talented specialists at MUSC. For this I am proud to receive the award.”
Scleroderma is a chronic autoimmune disease that attacks the body's own tissues. The disease often causes a thickening and tightening of skin, that in most severe cases, can cause serious damage to the body's internal organs, including the lungs, heart, kidneys, esophagus and gastrointestinal tract.
A pharmacist at Rutledge Tower Pharmacy, Brezden was part of a small contingent of South Carolina scleroderma patients and advocates who attended the foundation's 2001 meeting, whose theme “Many Faces, One Voice,” was held in Washington, D.C., June 23-26.
The meeting was capped with a special visit to Capitol Hill to discuss research and treatments, lobby funding and meet with legislative constituents. Brezden and her fellow South Carolinians met with U.S. Sen. Strom Thurmond, a representative from Sen. Ernest Hollings' office, Congressman Henry Brown, SC-first district and Congressman Lindsey Graham, SC-3rd district.
“It's rare to be able to meet personally with legislative constituents in this fashion,” said Brezden, referring to the Scleroderma Foundation's efforts to coordinate the group's Capitol Hill advocacy program on June 26. “I was very impressed with the level of awareness and open support displayed by legislators and their staffs to all of us. I feel our S.C. representatives put out an extra effort to welcome us and hear our concerns.”
For more than 220 scleroderma patients and supporters, the effort was difficult and physically challenging. Patients were able to temporarily overcome their own personal adversities—pain, fatigue, shortness of breath requiring portable oxygen and individuals requiring wheelchairs.
The group was addressed by Iowa Sen. Tom Harkin who sits on the Health, Education, Labor and Pensions Committee and helped write the landmark Americans with Disabilities Act legislation in 1990. Later, participants dispersed to visit senatorial offices in the morning and congressional constituents in the afternoon.
“I got a real feeling from the patients themselves that this was an event that was worth putting their extra efforts towards,” said Brezden, whose own mother suffers from this chronic disease. “For me it was also exciting. I felt that our presence spoke volumes for scleroderma sufferers everywhere.”
For now, Brezden plans to include news from the national conference in her support group's monthly newsletter. She also hopes to coordinate a meeting visit by Brown sometime this year. She is helping to coordinate the upcoming July 14 Charleston group meeting that will feature Brad Neville, DDS, professor of oral and maxillofacial surgery, College of Dental Medicine, who will talk on oral hygiene for scleroderma patients.
Later in October the group will sponsor a workshop featuring MUSC rheumatology and pulmonology experts who will talk more about the latest treatment advances and trials related to scleroderma.
For more information, contact Brezden by e-mail at: charleston@sclerodermasc.org.
The South Carolina Scleroderma Chapter consists of support groups in
Charleston, Greenville, Hilton Head and Columbia.
Charleston Support Group
(843) 832-9486
Columbia Support Group
(843) 832-9486
Greenville Support Group
(864) 859-2125
Hilton Head Support Group
(843) 785-9109