When people look at Gwendolyn Williams, they see a friendly face, a quick smile and a seemingly energetic woman. Few would imagine she suffers with a disease that not only makes every day a struggle, but could even claim her life.
Ten years ago, Williams was diagnosed with lupus. Since then, her life has changed dramatically. “Some days, just getting out of bed feels like I’ve run a marathon,” she said.
Lupus is a chronic autoimmune disease in which the body’s immune system confuses healthy cells with foreign substances, like viruses and bacteria, and attacks the body’s tissues and organs. According to the Lupus Foundation of America, the disease affects more than 1.5 million Americans and 5 million people worldwide. Around 90 percent of those diagnosed with lupus are women, and it is 2-3 times more prevalent in women of color, like African Americans, Asians, Hispanics and American Indians.
The disease affects three generations of Williams’ family—as many as 8 of her relatives have lupus and three more are undergoing tests now. But instead of mourning their condition, Williams and her family decided to do something about it. As volunteers, they help OMRF in its quest to learn more about lupus.
OMRF scientists have studied lupus genetics for more than 20 years and have helped identify more than 25 genes linked to the disease. Blood samples from Williams’ family members, both those with lupus and those without it, let researchers study the condition’s tendency to affect relatives.
“Data gathered from thousands of study volunteers has been required to help us identify these lupus genes, and we still have much to learn,” said OMRF rheumatologist Judith James, M.D., Ph.D., who heads OMRF’s Arthritis and Clinical Immunology Program. “We see hundreds of lupus patients in our clinics at OMRF, but we still rely on new lupus patients, their family members and other healthy volunteers to further our genetic studies.”
Doctors said Williams probably had lupus for years before her diagnosis, but it took time to pinpoint it. Hers is an aggressive form of the disease that keeps her on a laundry list of medications, and causes numerous symptoms and side effects: rashes on her face, neck and ears, nausea, achy joints, muscle pain, exhaustion, eye problems and hair loss. The disease has affected her memory, her bladder and kidneys. She’s had three mini-strokes and has been hospitalized more than 20 times since 2001.
Lupus has taken a physical toll, but it’s affected her dreams, too. Williams always wanted to be a nurse. She had completed 133 hours of nursing school when the disease forced her to give all that up. Her symptoms were so severe that she needed help to shower and get dressed in the morning. Many afternoons, she found herself too tired to drive home from work. The extreme fatigue and deep muscle pain were often too much to bear. “It’s like having the worst flu ever,” Williams said. “And it hurts clear down to your bones.”
Today, Williams is taking Benlysta, a new lupus drug which was tested in clinical trials at OMRF and came on the market last year. Before Benlysta’s approval, the last drug approved by the FDA to treat lupus was Plaquenil in 1955. Prior to that, aspirin was approved to treat the disease in 1948.
Benlysta has worked well for Williams, giving her more energy and helping lift the “lupus fog” that has plagued her. If the treatment continues to work for her, she hopes to be able to discontinue some of her other medications in a few months.
“Lupus is such a complicated disease, it can take years to diagnose,” said James, who holds the Lou C. Kerr Chair in Biomedical Research at OMRF. “The treatments available today are vastly better than they were 20 years ago, but we’re still looking for new medications to treat lupus. Almost every aspect of a person’s life is altered when a lupus diagnosis is made. We want to help them manage their disease and live full lives with as few side effects and difficulties as possible.”
Williams knows it takes research to yield better ways of treating this troubling and complex disease. When she was diagnosed, she’d never heard of lupus. She also wants more people to know how it affects lives. During May, which is Lupus Awareness Month, advocates help spread the word and educate the public about the disease.
“Whatever it takes, it’s worth it,” Williams said. “I want scientists to find out what’s going on in families like mine. Where in our genetics is this disease coming from? What can they do to stop it? But I really want to help anyone who’s living with this disease. Just find a way to break the cycle.”
To participate in OMRF’s lupus genetics studies, contact Tiny Powe at 405-271-3046.
