Lupus walk participants walk 1.5 miles along Pennsylvania Avenue to raise funds and awareness for lupus.
More than 1,500 people gathered and walked along Pennsylvania Avenue in Washington, D.C. on April 18 in support of a cure for lupus, an autoimmune disease that can damage many parts of the body including the skin, joints, and organs.
Some participants knew people affected by lupus and others just wanted to support a good cause. Many were lupus survivors,including Charlene Gilliam of Northeast D.C., who was diagnosed with lupus four years ago.
“We need a cure and we need people to know about this disease and take it seriously,” Gilliam said.
According to the Lupus Foundation of America, a normal immune system produces proteins called antibodies to protect the body from viruses, bacteria, and germs, but those with lupus cannot fight the these “foreign invaders.” Common symptoms include headaches, extreme fatigue, painful/swollen joints, fever, anemia, hair loss, and a butterfly shaped rash across the cheeks and nose.
“Lupus is a struggle,” said Courtney Bishop, development program manager for the DC/MD/VA Chapter of the Lupus Foundation of America. “Part of the struggle is knowing there isn’t a cure yet. It’s just a mystery. That’s probably more scary than anything else.”
The mission of the Lupus Foundation of America is to improve the quality of life for all people affected by lupus through programs of research, education, support and advocacy.
Now in its ninth year, its “Walk to End Lupus Now” raises awareness and funds to help solve this mystery.
Tavon Wilson, 25, a safety with the New England Patriots, was the Grand Marshall for this year’s walk. A native Washingtonian, Wilson said he was honored to be the Grand Marshall for the 2015 event.
“I was a part of the lupus walk last year because my aunt and my cousin both have lupus,” Wilson said. “And I want to do everything in my power to help find a cure.”
At least 1.5 million Americans have lupus, but the actual number may be higher because there have been no large-scale studies to determine the actual number of people across the nation living with lupus, according to the Lupus Foundation of America. There are more than 16,000 new cases of lupus reported annually in the United States.
Lupus strikes mostly women ages 15 to 44. Women of color are two to three times more likely to develop lupus than Caucasians, according to the foundation.
When Cammie Alston, 24, of Towson, Md., was diagnosed with lupus 10 years ago, she had no idea the challenges that would lie ahead. She is working toward a master’s degree in forensic pathology and is worried lupus could hinder her ability to work in that field.
“I want to be a forensic pathologist but I already have slight arthritis,” she said. “But I’m willing to do anything and everything I need to do to be the best at my job. It’s hard though.”
Dr. Don Thomas, Partner at Arthritis and Pain Associates of Prince George’s County and author of “The Lupus Encyclopedia: A Comprehensive Guide for Patients and Families,” said lupus is not as uncommon as people think.
“One out of every 200 young African American women are stricken with lupus and that’s quite a bit,” he said. “People still like to call it a rare disease and it’s not rare at all.”
An effective treatment for lupus has been hard to find because lupus affects everyone differently. But Thomas said there are several dozen medications currently being tested in clinical trials, and one of them, Benlysta is the first medication to have been approved by the U.S. Food and Drug Administration (FDA).
Thomas said he believes that lupus needs the help of high profile people like Nick Cannon, who has lupus, to build awareness.
“Lupus is actually more common than if you add up all the people with multiple sclerosis, cystic fibrosis, leukemia and muscular dystrophy combined,” he said. “So we do have to be more diligent in educating the public.”