Hear and read the stories of people living with Lupus Nephritis in this series of interviews.
In this series of articles, you can hear from people with Lupus Nephritis and learn about their experience of diagnosis, treatment and managing the symptoms of Lupus Nephritis in everyday life.
In 2006, Valerie was a vibrant freshman at the University of California, Santa Barbara, taking classes, working at the children’s center, joining several clubs, going to plays and concerts, and hanging out with friends. Then, she began feeling tired and had a persistent high fever. When her symptoms were at their worst, she could not walk down her hallway without feeling depleted. Then her urine changed to a dark brown, almost copper color, with white foam. She called her mother, a registered nurse, who told her to come home immediately. She was admitted to the hospital, and a kidney biopsy confirmed her doctors’ suspicions—she had lupus nephritis.
Lupus is a chronic autoimmune disease that is more prevalent in women. Lupus nephritis is a severe and potentially life-threatening manifestation of lupus resulting from kidney inflammation. Swelling around the eyes, legs, ankles, or fingers is often the first noticeable symptom. Severe cases can result in kidney failure. Approximately 60 percent of lupus patients will develop clinically relevant lupus nephritis, which is more likely to present severely in Asian Americans, African-Americans, and Latinos.1
Valerie’s immune system was “attacking everything,” she says. She visited multiple doctors, entered clinical trials, and tried various treatments. After a couple years, her kidneys failed and she had to be on dialysis four days a week, six hours a day for several months.
For Valerie, the feeling of constant fatigue was one of the biggest challenges of her disease. Many of Valerie’s friends didn’t comprehend the intensity of her exhaustion and pain. “Lupus has a reputation of being an unseen illness. You can’t do something, but you aren’t outwardly showing symptoms,” she says. “It is hard to balance being a young person and battling lupus. I was 21 on dialysis – everyone wants you to drink and go out, and I thought – no, I want to live.”
Following dialysis and participation in a clinical trial, Valerie began to recover, and her doctors adjusted her medications. By 2012, she was in remission, had graduated college with a Bachelor’s in Gerontology, and headed north to the San Francisco Bay Area. Now, Valerie works full-time as a health center coordinator at a skilled nursing facility, while also working toward her Masters in Long-Term Care Administration.
Despite going through six years of pain and confusion, she considers herself lucky, since so many lupus patients don’t get an accurate diagnosis for a long time. “To know that early on was incredibly beneficial because my survival depended on it,” says Valerie. “I am so grateful. There is light at the end of the tunnel.”
1. Ramesh Saxena, Tina Mahaian and Chandra Mohan,"Lupus Nephritis: Current Update," Arthritis Research & Therapy, 2011, 13:240. doi:10.1186/ar3378
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