Lupus: Brianna Ledford Doesn't Let Disease Dictate Her Life
"We want to help find a cure and hopefully help someone else."
For nearly five years, Brianna Ledford didn’t know why her body often ached and she felt tired for no apparent reason. Local doctors in her hometown of Barbourville, Kentucky, couldn’t find an answer, but within weeks of coming to Cincinnati Children’s, Brianna was accurately diagnosed with lupus.
Ever since she was 9 years old, Brianna Ledford can remember feeling fatigue sickness while on vacation with her family in Myrtle Beach, South Carolina. She loved being outside, but while sunshine brought smiles to other children, prolonged exposure to the sun often meant aches and pains for Brianna.
In August 2007, friends and neighbors in her hometown of Barbourville, Kentucky (located in Knox County, in the southeastern part of the state) began commenting on Brianna’s apparent weight loss. Now 13, Brianna began feeling sick more and more regularly. When her family doctor still couldn’t determine a cause, Brianna’s mother, Jennifer, decided it was time her daughter went to a hospital.
A few weeks later, Brianna was admitted into East Tennessee Children’s Hospital in Knoxville. But following two weeks of testing, doctors still couldn’t pinpoint her illness and suggested Brianna travel to Cincinnati Children’s Hospital Medical Center.
Finding Answers
During a two-week period, doctors at Cincinnati Children’s performed more tests on Brianna, including a bone marrow biopsy and kidney biopsy. Although they were scared about the unknown, Brianna and her mother said many of their fears were eased by the expert care and attention given by pediatrician Amanda Barrett, MD.
“She’s a special person,” says Jennifer, noting how Dr. Barrett did everything in her power to make sure Brianna would be back home in time for the annual Daniel Boone Festival, a big event held in Knox County in early October. “She even came in and checked on Brianna during her time off work,” Jennifer adds, saying she’ll never forget the extra attention Dr. Barrett gave to Brianna.
Test results came back and Brianna was soon diagnosed with Systemic Lupus Erythematosus, a non-contagious, chronic disease of the immune system. Symptoms can change over time, but generally include fatigue, body aches, skin rashes and joint inflammation. The cause of lupus remains unknown.
Tackling the disease head-on, Brianna underwent five months of chemotherapy as part of her treatment. “I hated it,” says Brianna, wincing at the memory. The therapy, though, was necessary. Better yet, it proved effective for Brianna, according to Jennifer. “She does everything she did before she got sick, we just have to be more careful and we have to be smart,” Jennifer says.
Today, Brianna combats her lupus by taking seven different medications and wearing ample sunscreen. She comes to Cincinnati Children’s once a month for treatment and check-ups at the Lupus Center, headed by Hermine Brunner, MD, MSc. “Sunscreen is your best friend,” says Dr. Brunner during a monthly check-up with Brianna.
Besides the excellent care her daughter receives at Cincinnati Children’s, Jennifer says she is also pleased with the fact that the hospital is a well-regarded research institute. Specifically, Dr. Brunner’s research is focused on biomarker discovery and new medications for lupus. “People come here from all over the world, so I’m very thankful. We just want to help find a cure and hopefully help someone else,” says Jennifer.
Living Life to the Fullest
Since being diagnosed with lupus, Brianna still leads the life of an active, energetic teenager. Cheerleading and softball are two of her main extracurricular activities at Knox County Middle School. But on any given day, Jennifer isn’t surprised to find Brianna and her younger sister, Brooklyn, outside in the creek that runs around their house hunting for crawdads. “She’s such an outdoorsy person,” said Jennifer.
The key to remaining healthy is to stay on top of the disease, according to Dr. Brunner, who advises Brianna to be on the lookout for symptoms of a lupus flare. Signs include red hands or fingernails, rashes on the face, body aches and fatigue. It’s important to be careful whenever you’re outside in the sun, suggests Dr. Brunner, which means wearing plenty of sunscreen and avoiding peak hours. “Be reasonable. Don’t be the one who goes out into the sun first and comes back last,” says Dr. Brunner.
Like any mother, Jennifer remains concerned about Brianna and her health, especially considering the big summer attraction for local teens is the county’s water park. But she’s glad to see that lupus hasn’t prevented her daughter from enjoying life. “This disease has not stopped her one bit. She went straight back to school, straight to cheering and then softball. Nothing stops her,” Jennifer says.
Keeping the Faith
Through it all, Brianna and her mother have kept their faith, attending church regularly on Wednesday and Sunday each week. “It’s important to have faith in God,” says Jennifer.
Wanting to share some advice with other patients, Brianna simply states her personal philosophy: “Everything happens for a reason.” Part of that, she adds, means maintaining a positive attitude. “She never got scared the whole time. I’m so proud of her,” Jennifer says.
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