Lupus walk participants raise money for cure
Stacy M. Brown | 9/27/2013, 6 a.m.
BALTIMORE Each year, thousands of people across the region join forces with the Lupus Foundation of America’s D.C./Maryland/Virginia chapter and walk with one unified purpose— to find a cure for lupus, a chronic, autoimmune disease that can damage any part of the body.
On Saturday, September 28, 2013, Congressman Elijah Cummings (D-MD) and Congresswoman Donna Edwards (D-MD) are scheduled to be grand marshals in the 6th annual Maryland Lupus Walk to be held at Rash Field located at 201 Key Highway in Baltimore City. Pre-event activities begin at 9 a.m.
“This walk brings together the local lupus community in a unique way, which provides hope and continued efforts towards fighting for a cure,” said Jessica Gilbart, president and CEO of the Lupus Foundation’s DMV chapter. “This life-altering and sometimes fatal disease often takes three to five years and four to six physicians before a diagnosis is confirmed. We walk for those who can’t.”
Gilbart says that donations from the walk are critical to funding free services offered by the foundation, as well as support and education that helps local patients thrive while living with the devastating disease, including the largest education program in the country, the Maryland Lupus Summit which is scheduled for Saturday, November 2, 2013 at Johns Hopkins University.
“We want the lupus community to take charge and feel empowered [over] their health,” Gilbart said.
The foundation estimates that 1.5 million Americans, including 35,000 in Maryland, have a form of lupus and, although the disease can strike men and women of all ages, 90 percent of those diagnosed are women.
Most people develop lupus between the ages of 15 and 44. The disease is three times more prevalent among all populations of color.
Once a diagnosis is confirmed, minimal treatment options exist and patients must try toxic therapies with harmful side effects. In 2011, the first drug in over 50 years received approval from the Food and Drug Administration (FDA). However, the lupus community still needs answers and support, which the local chapter provides along with other free resources, according to Gilbart.
“I was first diagnosed in August of 2011, almost a year after my mother died from multiple sclerosis (MS) and my doctor thought I also had MS based on some of the symptoms, which included fatigue, headaches, muscle aches and other things,” said Baltimore resident Alicia Stokes.
“After having an MRI and [getting] some blood work [done], they confirmed that I had systemic lupus erythematosus, a form of lupus that means the body’s immune system mistakenly attacks healthy tissue,” Stokes said. “I couldn’t imagine the road ahead of me with lupus. Each day is now different with some being more tolerable than others.”
Like Stokes, Baltimore resident Stephanie Teagle, also plans to participate in the upcoming walk. Teagle says the advice she would give others is to keep a journal of how you’re feeling each day— a tool that will assist doctors in making a correct diagnosis more quickly.
“It allows the doctors to see a pattern because people tend to run to the emergency room and they tend to see various doctors who don’t know each other and, therefore, it may take five years for a proper diagnosis,” said Teagle, who suffered three strokes and a heart attack prior to her diagnosis. “There must be a reason that I’m here today.”
Proceeds from the walk will also help fund the local chapter’s award-winning Patient Navigation Program, which includes telephone support; an emergency assistance fund; 16 support groups; three statewide summits; teleconferences; and personalized guidance to overcome obstacles associated with the disease.
Registration for the walk is free! Registrations can be made online at: www.MarylandLupusWalk.org. For more information about the walk or to make a donation, call 888-787-5380 or 202-787-5380 or visit the foundation’s website: www.LupusDMV.org.