Living With GPA: Tina Nardella’s Journey of Resilience, Adaptability and Hope
Tina was just 24 years old when her life changed forever. Today, she is 52 and lives in Moscow, Pennsylvania, where she has worked in the legal field for more than 32 years. Married, a former competitive baton twirler and instructor, and now a competition judge, Tina also loves to travel, is a lifelong Disney fan and proudly supports Penn State football. Beneath those passions, however, lies a decades-long journey with granulomatosis with polyangiitis (GPA/formerly Wegener’s granulomatosis).
In 1996, she was diagnosed with rheumatoid arthritis (RA) after developing persistent joint pain. At the time, arthritis was her only symptom, and she was treated for RA for nearly two years.
In August 1997, about two years into RA treatment, Tina married her husband, Doug. Shortly after their wedding, both came down with colds. While Doug recovered quickly, Tina did not. From late August through December of 1997, her sinus symptoms worsened dramatically.
By Christmas of 1997, the cartilage in the bridge of her nose collapsed — a condition often referred to as “saddle nose.” It took several more weeks to secure appointments with specialists and undergo further testing. A local hospital initially diagnosed the nasal biopsy as a benign tumor and recommended surgical removal.
Tina’s ENT, Dr. Mark Frattali, disagreed with that conclusion and requested that remaining biopsy tissue be sent to the Armed Forces Institute of Pathology for further review. In February 1998 — around Valentine’s Day — Tina finally received the correct diagnosis: GPA.
Although it took more than two years to uncover the true cause of her symptoms due to the initial RA diagnosis, once the sinus destruction appeared, it took less than two months to reach the GPA diagnosis. Until that moment, Tina had never heard of GPA — or vasculitis at all.
Treatment was Limited and Aggressive
At the time (late 1990s), Tina was placed on nearly every medication available at the time. “I was on Cytoxan® and lots and lots of prednisone,” she said. “I saw numerous specialists, including rheumatologists and oncologists.”
Eventually, she found what she calls her medical “team”—an ENT and a rheumatologist in New York City who specialized in vasculitis. By then, GPA had begun to affect her airway. “I was having issues breathing and was diagnosed with subglottic stenosis from the GPA.”
Subglottic stenosis is narrowing of the airway just below the vocal cords. Between 2001 and 2002, Tina underwent multiple surgeries to treat the stenosis. In 2005, she had surgery to correct her saddle nose. In 2006, she began treatment with Rituxan®, which she continued in varying doses until late 2020.
“I have been in remission since around 2010,” she added.
Years of treatment brought new challenges. Tina developed hypogammaglobulinemia (abnormally low antibodies [immunoglobulins] in the blood) after prolonged Rituxan use and began monthly intravenous immune globulin (IVIG) treatments in late 2023. “It has helped prevent frequent infections,” she said. “The only other medication for GPA I take currently is Bactrim® daily.”
Looking back, Tina says vasculitis has affected nearly every part of her life. “I was diagnosed at such a young age,” she explained. “I had to give up teaching baton, and I missed out on things because I was too sick or too tired from the illness or the medications.”
The Emotional Toll Has Been Significant
“It has definitely affected my mental health — and still does at times,” Tina admitted. “Even though I’m doing well right now, sometimes you think about what could have been.”
One of the most difficult aspects was the visible change to her appearance. “I will never look like the ‘old me,’” she said. “Not to mention all the prednisone that changes your appearance as well. I’m glad this is behind me for now, but the reminders are still there.”
Throughout her journey, Tina credits her support system for helping her survive the hardest moments. “I’m thankful for having a wonderful husband, who has stood by me through all of this,” she said. “We were newly married when all heck broke loose.” She is also deeply grateful for her family and her doctors.
“I don’t say this lightly — I’m alive and doing well today because of these two doctors,” she said, giving special thanks to Dr. Robert Lebovics (ENT/otolaryngologist) and Dr. Robert Spiera (rheumatologist).
When Tina was first diagnosed, finding information about GPA was extremely difficult. “The internet was so new at the time,” she said. “I was seen briefly at the National Institutes of Health, and they directed me to the Wegener’s Granulomatosis Support Group, now the Vasculitis Foundation.”
That connection proved life changing. “The information and support I received helped me find my current ENT and rheumatologist,” she said. “Both are amazing vasculitis specialists.”
Hope For Those Newly Diagnosed
“What gives me hope is how far research and awareness have come. Things are so much better than when I was diagnosed over 28 years ago,” Tina said.
Her message to others facing a new diagnosis is clear and reassuring: “You are not alone, and there is a future for you,” Tina said. “I was literally given a death sentence all those years ago, and thankfully I’m still here. Treatments are so much better now, and long remissions are obtainable.”
She finds comfort in a quote from Jon Bon Jovi that perfectly reflects life with chronic illness: “Map out your future but do it in pencil.”
For Tina, those words remain a reminder of resilience, adaptability, and hope.