Find inspiration and hope in these stories about people whose lives have been profoundly affected by lupus.
A Daughter’s Diagnosis Inspires a Family’s Cause
Lupus has had nearly 30 years to attack Annie Ravitz’s body. At age 11, it prompted her immune system to start destroying red blood cells. At age 14, the kidney became a target. A heart attack at 28 signaled clogged coronary arteries, and Annie underwent a triple coronary bypass. Despite top medical care and a sensible lifestyle, she’s lost count of the number of times she’s been hospitalized.
Nearly every part of Annie’s body – her vital organs, joints, memory, skin—has come under assault from the disease itself or the powerful drugs she’s taken to suppress her over-reactive immune system. “I’ve been sick more years than I’ve been well,” the 40-year-old New Yorker says. “And I’m not some special case.”
More than 1.5 million Americans have lupus, a chronic disease in which the body turns on itself in an unpredictable yet relentless pattern of flares and remissions. Existing medicines are highly toxic and can have debilitating effects.
“I’ve just fought hard to stay alive and to have some kind of life for myself,” Annie explains. “And I have a wonderful life except the sick part.” She went to college, worked in children’s theater and television, and is now exploring new career options.
The file cabinets in her 12th floor Manhattan apartment are stuffed with doctors’ bills—“they could fill up a room!” she exclaims—but her many friends and support group helps her get through the tedium of the bills and the inevitable highs and lows. “Growing up, there were always two friends or so who didn’t care I had lupus. And I have a great family—my older brother and his wife and kids, my parents.”
A Sense of Urgency
Annie’s father, Robert J. Ravitz, a New York businessman, deeply admires his daughter’s spirit, intellect, and attitude. “When I think of Annie, I hear Fred Astaire singing ‘Take a deep breath, pick yourself up, dust yourself off, start all over again...’ That’s Annie. She never gives up.”
But along with unwavering admiration for his courageous daughter, Robert and Annie’s mother, Francine, also have felt a mounting sense of urgency as the years tick by with far too little new insight into the disease. The toll on Annie’s health has only grown more intense. Her kidneys started to fail and she got a transplant. Drugs to keep her immune system in check have dramatically weakened her bones. A knee replacement is scheduled for June.
“We still don’t know why people get lupus, or why 90 percent are women,” Robert points out. “One would think these are fabulous clues, but in fact they’ve long been known. We still don’t have the keys to this mystery.”
There has been no new major lupus treatment in over 40 years.
“Lupus took over Annie’s body from the time she was diagnosed as a young teenager,” reflects her father. “In a way, when she was diagnosed, lupus took over our lives too.”
In the first few years after Annie’s diagnosis, the Ravitz’s acted as many parents do, getting educated about the disease and joining a lupus support organization. Robert went on to serve as a board member and President of the S.L.E. Lupus Foundation, a leading lupus organization headquartered in New York (and Los Angeles) that provides patient services and increases public awareness about lupus.
When the family joined the Foundation, it was itself branching out. It had started funding the work of lupus researchers in the New York metropolitan area, and in 1997 it spearheaded the nation’s first research conference on lupus at the National Institutes of Health in Bethesda, Maryland.
Robert recalls it was “the first time scientists had gotten together to ask: where are we going with lupus?”
Once the word was out that the S.L.E. Lupus Foundation had money for research, grant applications from across the country started flooding in. “We were the only private sector funder for lupus research,” Robert recounts. “We quickly realized, we have to try to replicate what we’re doing in New York on a nationwide basis.”
The Solution: Novel Research
In 1998, Robert and others at the Foundation invited nearly 30 people—top scientists, nationally recognized clinicians, families with lupus—from around the country to a meeting room in mid-town Manhattan to ask a pivotal question: “What’s the best way to accelerate progress in lupus?”
“We sat around a four-sided table with an opening in the middle and quickly boiled down the grant priorities to a short list. A consensus rapidly developed: novel research and young talent were it,” recalls Robert, who now serves as Co-Chairman of the LRI.
In the five years since the LRI was officially incorporated in 2000, it has followed this directive, raising millions to fund more than 40 groundbreaking research projects and support out-the-box thinking among brilliant lupus investigators.
A Reservoir of Hope
Annie describes the thrill she felt when her father described the new undertaking. “I was so in awe that he was going to take this on. Over the years, my parents would mention things, but if it (the science) didn’t have a cure or new treatment attached, I found it hard to get excited.”
“But the LRI is different,” she continues. “And really for the first time, I feel hopeful and not scared to be interested and involved.”
LRI-funded investigators already have uncovered lupus disease mechanisms, potential treatments, and diagnostic techniques in central nervous system lupus, premature cardiovascular disease, kidney disease (lupus nephritis), and photosensitivity.
“There are clinical trials now,” Robert points out. “Seven or eight years ago, there were none. And word has gotten out to pharmaceuticals that lupus is an area that needs work.” In addition, nearly three-quarters of the first round of LRI-funded researchers have gone on to secure even larger grants from the NIH.
“Now, with the LRI, there’s a reservoir of hope among lupus patients,” Robert says. “Science will solve this disease.”