By Donald Wittkowski
LaTonya Hicks passed out one day in December 2013. When she woke up, she was in a hospital and learned that she had emerged from a coma.
The diagnosis was lupus, a potentially deadly autoimmune disease that can attack virtually any organ – from the skin to the brain.
“I didn’t even know what lupus was back then,” Hicks, 55, a resident of Mays Landing, recalled of her initial diagnosis.
Now, not a day goes by when she’s not coping with the physical pain and emotional stress caused by lupus.
“It’s hard. It’s painful,” she explained.
On Sunday, Hicks and members of her family joined with hundreds of others on the Ocean City Boardwalk to raise money and awareness of lupus – all in hopes of finally finding a cure for a disease that is known as the “cruel mystery.”
Now in its 11th year in Ocean City, the Walk to End Lupus Now attracted about 700 participants and was expected to raise about $60,000. Altogether, the event has raised an estimated $400,000 to $450,000 for lupus-related research and education during its 11-year run, an organizer said.
“It shows that there is an amazing lupus community out there that supports each other,” Cindy Messerle, chief executive officer of the Lupus Foundation of America Philadelphia Tri-State Chapter, said of the event’s fundraising prowess. “It also shows there’s a huge need.”
Many of the walkers wore purple T-shirts, the color that symbolizes the fight against lupus. Signs and banners along the Boardwalk proclaimed “Help Us Solve the Cruel Mystery.”
The Lupus Foundation of America calls the disease “the cruel mystery” because the average patient has suffered from lupus for six years before it is diagnosed – and also because the cure remains elusive.
Researchers still haven’t figured out why, but lupus strikes mostly women, and people of color are two-thirds more likely to contract the disease.
Currently, five million people suffer from lupus worldwide, with an estimated 1.5 million in the United States. Messerle said the Philadelphia chapter estimates 40,000 lupus sufferers live in the tri-state area of New Jersey, Pennsylvania and Delaware.
Hicks, one of the lupus patients, takes medication as part of her battle with the disease and uses a walker at times to get around. In an interview, she emphasized it is her family support network that is so vital.
“What I go through, my whole family goes through,” she said. “Some days are easier than others. But other times, they have to help me with my cooking, my cleaning and helping me to walk.”
Her family members lent their support during the lupus walk by joining together as “Tee’s Team,” in honor of Hicks’ nickname.
John Hicks, 56, her husband of 23 years, had an aunt who died of lupus 50 years ago. He noted that he is concerned with both his wife’s physical and emotional well-being in providing her with care.
“I see what she needs and also try to make sure she is comfortable,” he said. “I also want to make sure she is feeling well emotionally, too.”
Marlton, N.J., resident Linda Roselli, another participant in the walk, said her battle with lupus makes her feel “like I have the flu every day.”
“I really don’t have any best days,” she said of her constant struggle with the disease.
Now 58, Roselli was diagnosed with lupus when she was 30. Determined to live her life to the fullest, she is currently enrolled in school as a computer student in pursuit of a new career.
“She doesn’t let lupus limit her life,” said her husband, Anthony Roselli. “One thing about my wife: I gain strength from her fight with the disease. She fights on a daily basis. She inspires me all of the time.”
On Sunday, Linda Roselli inspired more than just her husband. More than 50 people were part of her fundraising group called “Live … Love … Linda.”
The team’s initial goal was to raise $2,500, but it appeared the final figure would be closer to $4,000, Anthony Roselli said.
“She does have her daily struggles,” Roselli said of his wife. “But she gets her treatments and goes on with her life. All of us are here to support her.”