As a junior in high school, Taylor Church was diagnosed with IgA nephropathy (IgAN), a disease affecting kidney function. “Being diagnosed with a kidney disease was not something I would have ever imagined,” she said. “After receiving my IgAN diagnosis, I felt uncertainty [and] anxiousness.”

IgA nephropathy, also known as Berger's disease, silently attacks the kidneys, hampering their crucial role in filtering waste. For Taylor, the diagnosis was shrouded in questions and fears. What was this disease? How did it occur? What treatment options existed? Most importantly, how would this impact her future?

Finding an IgAN Community

It wasn’t until Taylor finished her undergraduate degree that she dove into understanding her disease. At the time of her diagnosis, Taylor’s nephrologist discouraged her from researching her condition online “because it would only scare me.”

“I had completed my undergraduate degree and was preparing to begin my doctoral program in occupational therapy, when I decided it is important that I am educated on my own health,” she explained. Taylor’s research led her to the IgA Nephropathy Foundation, an organization focused on research and supporting people with IgAN. Here, Taylor found more than information; she discovered a community of individuals who truly understood the challenges of living with IgAN.

The annual Spark conference, hosted by the foundation, became a sanctuary of sorts. For the first time since diagnosis, Taylor was surrounded by others who shared the same journey. “From the time of my diagnosis until Spark 2021, I had never met anyone else diagnosed with IgAN,” she said. “To be surrounded by an entire community who understands what you are going through is truly the most comforting feeling.”

Taking Charge of Her Health

In the initial years following Taylor’s diagnosis, the conversation in medical appointments was primarily between Taylor's parents and the nephrologist. However, during the first year of Taylor's occupational therapy graduate program, her approach changed. In school, she was learning about the importance of individuals being involved in their health care. “This education built my confidence to ask questions, share research findings, and ask for second opinions during my nephrology appointments,” she said.

One of the ways Taylor takes charge of her health is by being proactive about self-care. She explained that her kidney function has remained stable, so her focus is on “maintenance and monitoring.” To support her kidney health, Taylor focuses on lifestyle habits like eating anti-inflammatory foods, minimizing salt intake, monitoring her protein consumption, and staying hydrated. She also prioritizes her mental health and physical well-being by exercising. She particularly enjoys indoor cycling and boxing.

Becoming an IgAN Ambassador

Today, Taylor is an ambassador for the IgA Nephropathy Foundation. “I was inspired to become a patient advocate for IgAN from my own personal journey,” she shared. When she was first diagnosed in high school, Taylor said she felt lonely and confused. She wished she could connect with others who had walked in her shoes.

As an ambassador for the IgA Nephropathy Foundation, Taylor receives training in peer support, communication with medical and state professionals, and advocacy. Taylor is proud that she can be the resource for others she wishes she’d had as a newly diagnosed teenager.

Taylor’s had some exciting wins as an ambassador for the IgA Nephropathy Foundation. Last year, she was part of efforts to declare May 14 as IgA Nephropathy Awareness Day in Arizona. That same month, Taylor hosted a fundraising event with an indoor cycling gym in Arizona. Through these activities, Taylor is able to meet other people with IgAN and teach others who’ve never heard of the disease. She also raises research funds. “I am hopeful that we will find a cure for IgA nephropathy,” she said.

“Do not be afraid to speak up, ask questions, and voice your concerns because no one knows your body better than you!”

— Taylor Church

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Taylor’s road to becoming an ambassador for her condition started with learning to advocate for herself. Taylor encourages anyone with IgAN, or another health condition, to speak up for themselves. “Do not be afraid to speak up, ask questions, and voice your concerns because no one knows your body better than you!” she said.

Talk With Others Who Understand

At MyKidneyDiseaseCenter, the site for people with kidney disease and their loved ones, people come together to gain a new understanding of different kidney diseases and share their stories with others who understand life with kidney disease.

Do you relate to Taylor’s journey? How have you learned to speak up with your health care providers or advocate for people with IgAN? Share your story in the comments below.