Finding Her New Normal:
Kathleen Weller’s Journey With GPA
Kathleen lives in Jacksonville Beach, Florida, with her husband, Sam. She’s a mother to one son and a grandmother to three grandchildren. Her Facebook page describes her simply: “A Solitary Life, Created for a Journey, Finding My Way Home.”
That description captures something essential about Kathleen’s journey with granulomatosis with polyangiitis (GPA). At 72, she has lived with the disease since 2019, navigating uncertainty, physical loss, faith, resilience, and a determination to keep learning—not only for herself, but for others living with GPA.
Searching for an Answer
Kathleen’s illness began around Christmas 2017. She became sick and started receiving prescriptions for antibiotics from her primary care physician. Over the following months, she was prescribed at least half a dozen different antibiotics, but nothing solved the underlying problem.
It took months to realize that there was no antibiotic that was going to help. From January 2018 through March 2019, Kathleen spent approximately 15 months trying to understand what was happening to her body. She developed severe problems involving her ears and nose, along with profound anemia that required blood transfusions. Yet, a diagnosis did not come quickly.
Frustrated by the lack of answers, Kathleen eventually found an ENT and a hematologist on her own. Her ENT treated her persistent ear problems with tubes and repeatedly cleaned crusting from her nose. Eventually, he discovered a hole in her nasal septum.
Meanwhile, Kathleen had been entering her symptoms into an online form, trying desperately to make sense of what was happening. “I came up with Wegener’s… as I matched all 12 of the symptoms.” Wegener’s granulomatosis is the former name for what is now called GPA. When Kathleen mentioned the possibility to her ENT, he ordered a biopsy of her nasal tissue.
She remembered the moment vividly. “He was also standing up against a wall at the time and slid to the floor.” The biopsy, along with the findings of her ENT and hematologist, ultimately led to a diagnosis of GPA. They worked together to find a rheumatologist who could see her the very next day.
Learning to Live With GPA
Since her diagnosis, treatment has become a regular part of Kathleen’s life. She receives Rituxan® every six months and takes methotrexate weekly along with folic acid. She was also on avacopan for 18 months before recently coming off the medication. Kathleen said it helped control her inflammation better than methotrexate.
She has also been through prednisone tapers more than once. In 2019, while taking 60 mg of prednisone, her body seemed to lose any sense of day and night. For nearly three months, she slept for a few hours, was awake for a few hours, and repeated the cycle around the clock. While her husband slept, Kathleen needed ways to occupy the middle of the night. She began taking live online art classes—one from France and another from England—and started painting in watercolor and mixed-media acrylic. Art became part of what she described as her new normal.
But medications tell only part of the story. “I’m exhausted every day of my life,” Kathleen said. “I wake up tired. I brush my teeth tired. I eat tired. I go back to bed tired.” On days when she has nothing on her calendar, she often stays in her pajamas. “I usually don’t bother getting dressed—just throw a sweater over my pj’s.”
When she considers what she has lost physically since her diagnosis, she said it can feel overwhelming. Yet those losses have happened gradually. “Graciously, I’ve lost use or have had reduced use of my body in stages,” she said. “I miss energy the most. I miss hearing a close second.”
The Questions That Helped Her Find Her Way
Before her diagnosis, Kathleen was an active pastor. She was ordained in the Presbyterian Church (USA) in 1993, and faith had long been an important part of how she understood her life. After the initial swirling of questions and emotions that came with a rare-disease diagnosis, Kathleen returned to two questions that had guided her for many years. The first was: Who am I to be in this situation? The second, close on its heels: What am I to do?
For Kathleen, these are faith-based questions. They do not assume that she controls her life. They ask her to live into the life she has been given—with goodness, truth, and beauty. They are not passive questions. They leave room for choice and responsibility within whatever circumstances life presents. And they are questions Kathleen believes are possible to ask and answer through faith in a Divine Mystery that holds us when we lean in closely.
Becoming Her Own Advocate
Kathleen’s support system includes small groups of friends she has known for years—school friends, work friends, and friends from continuing education. Her husband has also become an important part of managing the practical realities of daily life. “He’s done our grocery shopping since 2019,” she said.
Kathleen belongs to several online GPA support groups, which were valuable when she was first diagnosed. Over time, however, her relationship with those groups changed. “They were helpful in the very beginning,” she said, “but I find I have grown away from the drama of them, and the mis-information.”
She has become her own kind of student and advocate. “Forever a student,” is how she described herself. Kathleen follows medical journals and educational panels, learns about the medications she takes, and keeps up with organizations and medical centers such as the Vasculitis Foundation, Mayo Clinic, and Cleveland Clinic. For her, knowledge is part of advocacy—and part of taking responsibility for her own well-being.
A Team of Doctors
Today, Kathleen’s care involves a team of specialists at Mayo Clinic in Jacksonville:
- Rheumatology: Dr. Reena Yaman
- Nephrology: Dr. Shane Bobart
- Uro-Gynecology: Dr. Sherif El Nashir
- Cardiology: Dr. Nahyr Lugo-Fagundo
- Immunology/IVIG: Dr. Jacqueline Squire
- ENT: Dr. Paul Radabaugh, Jacksonville Nasal and Sinus Institute
Her rheumatologists at Mayo have always been fellows. Dr. Yaman is her third, and Kathleen expects to have a new rheumatologist by the end of 2026. That continuity of care matters because GPA can affect multiple systems in the body—and because Kathleen has learned to pay close attention when something changes.
When Symptoms Couldn’t Be Ignored
n January 2025, Kathleen experienced a major flare. When she felt that things were rapidly deteriorating, she went to the emergency department at Mayo Clinic in Jacksonville. “The wheels were coming off the bus,” she said.
Her rheumatologist, nephrologist, pulmonologist, IVIG physician, and uro-gynecologist all became involved. It took nearly nine months, along with changes in medication, before the disease became inactive again.
The experience reinforced something Kathleen had learned over the years: With GPA, changes in symptoms cannot simply be ignored or waited out. Her first rheumatologist at Mayo told her that GPA was not likely to kill her, but that she needed to remain diligent about medication side effects and seek medical attention when things began to change. “I believed him,” she said.
A Smaller World, But Still a Full Life
GPA has changed the way Kathleen moves through life. She chooses to avoid indoor crowds, including restaurants, concerts, and theaters. She has not been on an airplane since 2018. But living in Florida gives her alternatives. “The good news is I live in Florida and can find outdoor equivalents.” Her family, who lives up north, used to be people Kathleen often flew to visit twice a year. Now they make an annual trip to Florida instead. “It’s not a hardship visiting Florida in November to April!”
Her world may be smaller than it once was, but Kathleen has not stopped looking for ways to participate in it. Painting, learning, spending time with family and friends, and staying engaged with the medical and rare-disease communities have all become part of her life.
What Does Hope Mean?
For Kathleen, hope is not about pretending everything will miraculously get better. “Hope is an interesting word,” she said. “Most people use it to describe magical thinking. I don’t subscribe to magical thinking.”
Her hope is practical. She hopes that people with GPA will receive good care… they will participate in research studies when possible… that better diagnostic tools and medications will continue to emerge. “Even a cure; not in my lifetime, but soon.”
Equally grounded, she added, “My hope for myself is that I do not stop in my resolve to be well, and advocating on behalf of others.”
Learning What Is Possible
When people ask Kathleen how she manages everything GPA has brought into her life, she has a simple answer. “When people say, ‘how do you do it?’ I reply, ‘it is my only choice.’” She does not believe that fighting the reality of GPA by pushing harder, stressing constantly, or denying what is happening is the answer. “This particular disease pushes back,” she said. Kathleen encourages others living with GPA to discover what a sustainable life looks like for them.
Her advice to people in the online groups she remains connected with is straightforward: “Find your new normal. Embrace it. Enjoy it. Be happy with it.” She doesn’t mean simply accepting a diminished life. She means recognizing what is possible now rather than measuring every day against what used to be possible.
For Kathleen, that perspective has become about more than managing a rare disease. It’s about remembering that a person is more than a diagnosis, more than a list of symptoms, and more than the things their body can no longer do. “Your well-being is not in what you do,” she said. “It is in who you are.”
Kathleen hasn’t found all the answers. She has found a way to keep asking the questions—and to keep moving toward goodness, truth, beauty, and a life that is still her own. She’s still finding her way home.
