Sharing Her Journey with Kidney Disease: Thelma's Story
December 20, 2024 Posted by: Eli Lilly and Company
Thelma Barber was only 12 when her hands and feet started to swell. For a decade, she never knew why. Like 9 of every 10 people with kidney disease, she was undiagnosed.
Today, Thelma has become a fierce advocate for herself and millions of others living with kidney disease, including those who may not know they have it.
"You have to advocate for yourself and talk to your doctor."
Growing up, Thelma's mom did what she could to help her. Living in an impoverished neighborhood in The Bronx, New York, their family relied on government programs and free clinics for health care. At appointment after appointment, Thelma was told that all she needed to do to combat her fatigue and swelling was lose weight. But she knew there was more to her story.
Her diagnosis finally came in 1993, when heightened flu-like symptoms led Thelma to the doctor. But this time, as an adult with a job that provided her with medical insurance, Thelma didn’t go to a free clinic. An initial appointment with a primary care physician led to an appointment with a nephrologist, a doctor who specializes in kidney conditions. That's when she was told for the first time that she had kidney disease. It had taken years, but Thelma now had a plan to move forward with getting the care she needed.
Thelma had finally received the answers she needed. This felt particularly important as a Black person, a demographic that is disproportionately affected by kidney disease. "What's been critical in my journey is recognizing that no one will fight harder than myself because no one knows my body better," she says.
Through years of effort and determination, Thelma learned how to stand up for herself and ask the right questions, talk to the right doctors, and get the care that was right for her.
Six years later, she received her first kidney transplant. It came from her sister and allowed Thelma to do something she wasn’t sure was possible: become a mother. While pregnant with her twins Trent and Matthew, Thelma's transplanted kidney began to fail and the search for another kidney began. When her boys were two years old and running around the house, she answered the phone to learn that a kidney was available for her from a deceased man and that she needed to head to the hospital. One of his kidneys saved Thelma’s life.
Today, Thelma continues to live with her second transplant. She is off dialysis and works closely with her doctors to manage her kidney disease. And now that her twins are in high school and she no longer works due to her condition, she’s devoted her life to being a patient advocate for others as she was for herself.
"My relationship with my doctors has made all the difference."
More than 35 million American adults are estimated to have chronic kidney disease, but 90 percent don't know it. As an advocate for a number of national nonprofit patient organizations working to raise awareness of kidney disease and health equity, Thelma has become a pivotal voice for people like her living with kidney disease and other associated conditions.
"Many people from underserved communities feel like they don't have a voice about their health care. My story is proof that they do," she says.
Through her advocacy efforts, Thelma's partnered with It Takes 2™, a nationwide effort that emphasizes the importance of early testing and diagnosis for those living with kidney disease.
"Doctors are a vital part of the equation when it comes to managing your kidney health," she says. It takes two people—a patient and health care professional—to detect kidney disease and take steps to reduce the potential for serious complications.