Many small steps toward a lupus cure
Published: June 19, 2005
Cathy Pecora’s body is her own worst enemy.
Pecora has lupus, a baffling autoimmune disease that causes her body’s defense system to mistakenly attack its own vital organs.
Saturday morning, Pecora, a Hackensack resident, woke up, as she often does, with achy joints and shortness of breath. But she put on sneakers and participated in the third annual Walk With Us to Cure Lupus at the Meadowlands Sports Complex.
Lupus, an inherited, potentially fatal disease, affects 1 million Americans, 90 percent of whom are women, and is particularly prevalent among minorities.
“I really don’t feel good, but I’m pushing for the cause,” said Pecora, 49, who was diagnosed with lupus nearly 30 years ago.
“I get moments when I feel like superwoman. The next day, I’m flat on my back,” she said.
She kept up a steady pace with five friends, including her sister, Norma Conkle of Maywood. They all wore bright yellow T-shirts that read “Cathy’s Angels” on back.
“We have to keep her alive as long as we can,” Conkle said.
About 3,500 participants - 500 more than expected - turned out for the five-kilometer (3.1-mile) walk and raised more than $500,000 in online and walk-in donations, said Anne Lytle, a spokeswoman for Alliance for Lupus Research, the non-profit New York-based organization that sponsored the event.
They gathered on the 50-yard line of Giants Stadium under blue skies, balloons and a booming sound system for music, speeches and autographs from New York Jets stars, including wide receiver Wayne Chrebet.
Then they followed the walkathon route up, around and through several levels of the stadium and back, before grabbing free fruit and pastries and heading home.
The turnout was “unbelievable,” said Woody Johnson, owner of the Jets, founder of the national research organization and chairman of the lupus walk.
“It’s a tough disease,” said Johnson, whose family founded the giant pharmaceutical company Johnson & Johnson. Johnson’s daughter, now in her early 20s, was diagnosed with lupus at age 10.
“It’s very hard to diagnose … and we come from a medical family,” he said.
Raising public awareness about lupus and getting political are key strategies for advancing research, Johnson said.
“Politics is all local,” he said. “If you get people interested [in lupus], they’re going to express their views to more congressmen and ask: What are you doing for these people?”
Amazon discount!
New Hope for People with Lupus: Your Friendly, Authoritive Guide to the Latest in Traditional and Complementary SolutionsStem-cell research, though controversial, is crucial, Johnson said.
“I’m totally in favor of stem-cell research, if I can save my daughter and other people’s daughters and wives with stem cells,” Johnson said.
The cure could be a vaccine or technology that would help regulate the antibodies that fight disease, but that go out of control with lupus. “All we have to do is turn the switch off,” he said.
People from all over the state and all walks of life donned T-shirts with different cure-lupus slogans, such as “The future is in our hands,” worn by Dr. Clifton R. Lacy, president and chief executive officer of Robert Wood Johnson University Hospital in New Brunswick.
“We’re very supportive of the lupus walk and fund raising for research,” said Lacy, a cardiologist and former New Jersey commissioner of health.
“Everybody knows somebody that has somebody who suffers from lupus,” he said.
Leah Crocker of Sayreville, a personal trainer who has lupus, was there with 20 people wearing “Leah’s Lifesavers” T-shirts. Crocker, 46, was diagnosed at age 20 when her hands didn’t recover from surgery for carpal tunnel syndrome.
The trauma of the surgery, she said, tripped the lupus. Her hands swelled and turned blue, and she could no longer make a fist, write or turn on a faucet.
Exercise relieves the lupus a little. “It’s tolerable, but that’s all it is. I know it’s still alive there in my body,” Crocker said.
Vinny Carnevale was walking for lupus research on Saturday because a co-worker lost her brother to the disease, he said. Before that, “I had no idea what lupus was,” said Carnevale, 35, a senior advertising executive for The Record, a co-sponsor of the walk with its sister publication the Herald News, as well as Johnson & Johnson, Hess, Wachovia, the Jets and others.
“I learned quite a bit about lupus. I didn’t realize how many people are affected,” he said.
Pecora knows firsthand all about lupus.
She was diagnosed at 21, but managed to work as a registered nurse until it wore her out. She went on permanent disability nine years ago.
“I have heart, lung and kidney issues,” said Pecora, who also has joint aches and severe arthritis in her hands.
She takes 15 pills a day, including steroids, antimalarial drugs and what she describes as “a lot of dangerous immune-suppressant medications for a lot of multiple, overlapping diseases.”
This includes chemotherapy in the past for kidney and lung disorders.
“The autoimmune system thinks it’s going after something bad. Instead, it attacks healthy tissues,” Pecora said.
Stem-cell research is the key to treating lupus, she said, because “there hasn’t been any new therapy for 30 years.”
As for her own prognosis, “it’s sort of like you’re winging it. You just have to say a prayer that we live the next couple years.
“They expected me to be much sicker 10 years ago. I just keep taking horrible drugs to keep plugging along, literally one day at a time,” she said.
If you enjoyed this good news Subscribe to Good News Blog
Share this
To share this simply copy and paste one of the below URL's: