A New Normal: Jennifer Mullen is Living and Thriving with GPA
Jennifer, a 33-year-old mother of two living in Salt Lake City, Utah, has navigated a challenging health journey, leading to a diagnosis of granulomatosis with polyangiitis (GPA). Her story is one of resilience, adjustment, and finding joy amid uncertainty.
Jennifer’s symptoms began in 2022, initially presenting as what she described as “attacks” consistent with mast cell activation syndrome (MCAS)—a condition where mast cells release too many chemicals, causing allergy-like symptoms without a clear trigger. “My face, lips, and hands would swell, accompanied by a rash covering my body, throwing up and diarrhea,” she recalled. Sinus and congestion issues followed in 2023, escalating to a double ear infection in April 2024 that resulted in permanent hearing loss in one ear.
The path to diagnosis spanned two and a half years, culminating in July 2024. “I first saw my primary care physician, then an ENT, then another ENT who specialized in the ear,” Jennifer explained. Despite numerous tests, including CT scans, X-rays, and even surgery to alleviate sinus issues, it was the antineutrophil cytoplasmic antibody (ANCA) blood test that confirmed the diagnosis. “I had never heard of vasculitis before my diagnosis,” she admitted, noting that prior misdiagnoses included MCAS and Ménière’s disease (a disorder of the inner ear that causes episodes of vertigo, hearing loss, ringing in the ears, and a feeling of fullness in the ear).
While Jennifer’s current treatment involves rituximab infusions every six months, she considers herself fortunate. “I’m very lucky that I have not had any major organ involvement so far.” However, the treatment does come with side effects such as low energy, little appetite and some thinning of her hair.
Living with vasculitis presents unique daily challenges for Jennifer. The most significant impact has been on her hearing. “Losing my hearing suddenly was so frightening,” she reflected. While she regained most of the hearing in her left ear, her right ear will never recover, forcing her to adapt to a “new normal.” She has invested in hearing aids and various technologies to make life easier and this adaptation extends to her family, who have had to change how they interact and communicate.
Jennifer acknowledged the difficulty of self-advocacy in that she’s had to advocate for herself and express what she needs in new ways with which she is still uncomfortable. The daily struggle with vertigo, dizziness, and loss of balance can also be debilitating, sometimes preventing her from driving. Even physical changes, like the appearance of her nose, have required acceptance. “For a long time, it was so distressing to me that I had saddle nose, but I’ve accepted that our appearance changes so much over time anyways,” she said. Fatigue is also a constant companion for her. “I’m tired if I do too much in one day and I usually have to rest the next couple of days.”
Despite these challenges, Jennifer finds profound joy in her life. “By taking care of myself, advocating for myself and deciding to live life despite vasculitis, I experience so much joy in all the uncertainty,” she said. Simple pleasures, like hearing her children’s voices or enjoying a clear sound she hadn’t heard in a while, are cherished. She also values her ability to engage in long walks and pursue hobbies on good days, emphasizing the importance of “showing my children resilience.”
Emotionally, the journey has been difficult, especially as Jennifer already lives with bipolar disorder and anxiety. “I’ve been forced into learning better coping skills so that I can keep being who I want to be and who I need to be for my family,” she explained. Her husband, Brandon, and family have been her solid support system, learning about her illness to better understand how to help. During flare-ups, rest is paramount, though it can be difficult for her to accept help and allow others to take care of her.
To cope and empower herself, Jennifer has embraced learning about vasculitis, consuming medical journals and joining support groups. “Learning as much as I can about vasculitis has been so helpful,” she noted. “Joining different groups and reading about others’ lives and experiences has given me so much hope.”
A profound source of inspiration for Jennifer comes from J.R.R. Tolkien’s The Lord of the Rings. She frequently turns to Gandalf’s words to Frodo Baggins: “All you have to decide is what to do with the time that is given to us.” This quote resonates deeply with her belief that while circumstances are beyond our control, our response to them is not. She feels that “we are all here to learn. Learn about who we are supposed to be and to be the kind of human that makes a difference in others’ lives by small means and expressing love to those who may be different or believe differently than us.”
For those newly diagnosed with vasculitis, Jennifer offers a message of empowerment. “Focus on what you really want out of life and pursue it wholeheartedly. Be kind and patient with yourself. Become the best version of yourself. Advocate for yourself and learn as much as possible about your illness.”
“This isn’t a death sentence, this is a wakeup call to live your life to its full potential. You’ll be amazed at what you survive and what you get through. We are all on this journey. You can decide what you do with the time you have left.”
Jennifer concluded with a powerful quote from Russell M. Nelson: “The length of your life is not as important as the kind of life you live.”