Tasha Mollet’s Vasculitis Journey:
Learning to Listen to Her Body
When Tasha first considered sharing her story, she almost decided not to. There was a lot to process, and even more that was hard to express. But then she thought about the stories she had read after her own diagnosis—stories that helped her feel less alone and gave her a better understanding of a disease she had never heard of before.
“I almost changed my mind because it was a lot that I really didn’t know how to put into words,” Tasha said. “But then I thought if my story can help just one other person then something good can come from it.”
For Tasha, sharing her experience is about exactly that: helping someone else recognize that something may not be right and encouraging them to advocate for themselves.
A Life Interrupted by Symptoms
Forty-three-year-old Tasha lives in Pikeville, Kentucky, with her husband, Austin, and their 10-year-old daughter, Reagan. She is a wife and mother who loves traveling, shopping, reading, and spending time with her family. She also works in the medical field as a CT and MRI technologist.
Looking back, Tasha can trace some of her earliest symptoms to 2016, when she was pregnant with her daughter. She suddenly found that she could not breathe normally through her nose. It felt as though her nasal passages were swollen shut. She was repeatedly told it was pregnancy rhinitis and that it would eventually go away. It didn’t.
About two and a half years later, she began experiencing problems with her ears, eventually having tubes placed because of hearing issues and recurrent ear infections. Then came sore throats and sinus headaches.
She made multiple trips to her family doctor and urgent care and was repeatedly given antibiotics. At different times, she was told she had strep or a sinus infection, although she did not test positive for strep.
Throughout this period, her blood pressure was also high—a problem that had begun during pregnancy. None of these symptoms seemed connected. That would become one of the most significant parts of Tasha’s story.
The Symptoms Became Harder to Ignore
In October 2021, Tasha developed swelling and pain in the index finger of her right hand. There had been no injury and no obvious explanation. The swelling and pain would disappear after a few days, only to return months later.
Then, in the spring of 2022, she developed more severe symptoms. The fingers of her right hand became numb and painful, with a sensation that felt like a tourniquet was cutting off her blood flow. She was told she had carpal tunnel.
Still, the bigger picture wasn’t coming together. “I had many misdiagnoses and delays in treatment,” Tasha recalled. She had seen multiple providers and specialists over the years, but no one had yet looked at all of her symptoms as pieces of the same puzzle. “None of these symptoms I was having was looked at as a whole by any provider,” she said.
Then, in October 2022, everything changed.
“I Felt Like My Body Was Shutting Down”
Tasha was hospitalized with what was initially diagnosed as double pneumonia and acute kidney failure. She spent a week in the hospital before being discharged, but she wasn’t getting better. Instead, she continued to decline. “I felt like my body was shutting down,” she said. “It was a struggle to do daily tasks or even to make it through the day.” Tasha knew something was seriously wrong.
A friend began researching her symptoms, and Tasha started doing the same. One thing became increasingly clear to them: she needed to see a rheumatologist. Getting that appointment wasn’t easy. At the time, there was a several-month wait. Fortunately, someone Tasha worked with was able to help her get an appointment.
That appointment would begin to connect the pieces.
Finally, an Answer
Tasha saw rheumatologist Travis Sizemore, DO, MPH, who almost immediately suspected that she had a form of vasculitis. She had never heard of vasculitis before her own illness.
Her eventual diagnosis was ANCA-associated vasculitis. Her records have used granulomatosis with polyangiitis (GPA) and microscopic polyangiitis (MPA) interchangeably, and her kidney biopsy showed necrotizing and crescentic glomerulonephritis, which is a kidney condition that damages the tiny filters in the kidneys. Some of the filters can become severely damaged or die, and scar-like tissue can form around them. Because of this, the kidneys may stop working properly very quickly.
Her diagnosis was confirmed by kidney biopsy in November 2022. After years of symptoms, misdiagnoses, appointments, antibiotics, and unanswered questions, Tasha finally had an explanation.
Treatment began with TAVNEOS®, rituximab, and prednisone. Her treatment journey has continued to evolve. TAVNEOS was eventually discontinued, and Imuran® was added. She continues to receive rituximab infusions every six months, takes Imuran daily, and remains on a low dose of prednisone. She also continues to take medication for high blood pressure.
The medications have brought their own challenges. Prednisone, for example, has caused weight gain, while her immunosuppressive medications have reduced her body’s ability to fight infections.
Learning What a Flare Feels Like
Tasha has learned that having vasculitis isn’t simply about receiving a diagnosis and beginning treatment. It is an ongoing process of monitoring, adjusting medications, and learning to recognize changes in her body. She was taken off steroids twice, and both times she experienced major flare-ups. She was eventually restarted on prednisone and continues to take a low dose.
Vasculitis has affected her energy levels and breathing, and she was also diagnosed with asthma during this period. The uncertainty has affected her emotionally as well. There is anxiety that comes with not knowing what tomorrow will bring. “I worry about what will happen in the future,” she said.
Tasha’s rheumatologist, Dr. Sizemore, eventually moved, and she no longer sees him for her care. She has since found another rheumatologist, Dr. Hamza TanToush, whom she trusts just as much with her ongoing treatment.
Today, Tasha has been told she is close to remission, but she isn’t quite there yet. Her kidney function, which was severely affected when she became ill, returned to normal after approximately six months of treatment. Her ANCA antibody bloodwork, however, remains abnormal.
For now, she continues to take her treatment one day at a time.
Looking Toward Remission
Despite everything she has experienced, Tasha remains focused on what lies ahead. Her greatest hope is simple: remission and more time with her family. “I look forward to one day being in remission,” she said. “I want to watch my daughter grow up and be there for her in every moment I can.” That goal has given her perspective throughout the uncertainty.
Tasha has also found comfort and information through connecting with others and researching vasculitis. She has explored numerous online resources and forums, including the Vasculitis Foundation, and said that reading other people’s experiences helped her tremendously after her diagnosis.
Those stories helped her feel less alone. Now, she hopes her story can do the same for someone else.
“No One Knows Your Body Like You Do”
If Tasha could offer one piece of advice to someone who is struggling to find answers, it would be to listen to their body and speak up. “Always advocate for yourself even if that means switching providers or doing your own research,” she said. “No one knows your body like you do, you know when something is not right.”
Her journey is a reminder that vasculitis can present in complicated ways, and that getting a diagnosis may take time. For Tasha, symptoms that once seemed unrelated eventually became part of a much bigger picture.
She continues moving forward. She is a wife, a mother, a medical professional, and a woman living with ANCA-associated vasculitis. She is still waiting for remission, but she is also looking ahead to the life she wants to continue living. And by sharing her story, she hopes someone else will recognize that their symptoms matter, that their questions are worth asking, and that they should never be afraid to advocate for themselves.