Navigating EGPA: Henrietta “Henri” Malizia’s Journey of Resilience and Hope
Henri, a 71-year-old former critical care nurse and nurse educator living in Davenport, Florida, embodies remarkable resilience. She grew up in Canada where she met her Italian-born husband, Al, and they immigrated to the USA in 1989. Married to Al for 46 years, with an adult son named Derrick, Henri has built a life filled with family, travel, and a passion for Corvettes. Her journey took an unexpected turn in her early sixties when she began experiencing perplexing symptoms that would eventually lead to a diagnosis of eosinophilic granulomatosis with polyangiitis (EGPA).
Henri’s initial symptoms were debilitating and wide-ranging. “I initially developed intense fatigue,” she recalled, a stark contrast to her previously high-energy self. This was accompanied by a rapid onset of new allergies, frequent infections affecting her eyes, ears, and sinuses, and severe, difficult-to-treat asthma. She also experienced hearing and voice loss, mouth ulcerations, skin changes, and neuropathic pain in her hands and feet. In a four-year period, she endured 32 infections requiring antibiotics or antifungals—evidence of her condition’s severity.
The path to diagnosis was difficult, spanning five years from the onset of her symptoms in February 2017. Henri saw many specialists, but a clear diagnosis remained elusive. “Each looked at only their piece of the puzzle and sent me on my way,” she explained, expressing a common frustration among those with rare diseases.
A significant hurdle in Henri’s diagnostic journey was an initial misattribution of her symptoms to severe mold contamination in her rental home. While the mold was indeed an issue, her symptoms persisted and worsened long after she moved into a new, mold-free home. “This clouded the initial years of my illness,” she added.
Henri credits her primary care physician, James Scelfo, MD, with unwavering support. Their combined research pointed to EGPA, though Dr. Scelfo had never encountered the disease before. The definitive diagnosis finally came in June 2022 from Peter Merkel, MD, MPH, at the University of Pennsylvania. The diagnosis process involved CT scans, a comprehensive clinical history, and lab testing, including a DNA test.
Currently, Henri manages her EGPA with benralizumab (Fasenra®) every 30 days, along with nasal and inhaled steroids. She reports no side effects from these medications.
Living with EGPA has significantly reshaped Henri’s daily life. Medical appointments and tests now occupy a big portion of her calendar, and she is far more vigilant about avoiding illnesses and infections, limiting activities that involve large crowds. International travel now requires meticulous planning, and she pays close attention to weather and air quality, as cold air and rapid temperature changes can trigger asthma attacks.
Despite these challenges, Henri maintains a positive outlook. “I’m more mindful about working out regularly, eating a low-sugar, healthy diet and finding joy each day,” she shared. She has also discovered a new appreciation for exploring the US with her family, finding it less complicated than international travel. “I relax more and better, believing it contributes to my overall health. I pray more. I’m learning to plan less intensely and go with the flow.”
EGPA has presented some unique challenges. Henri has lost the ability to write with her right hand and is now learning to use her left. Vocal cord surgeries every couple of years and the resulting voice limitations are also difficult. The family also underwent a home renovation to make it handicapped accessible. Henri’s husband worked until age 78 to ensure they had excellent health insurance, highlighting the financial strain that can accompany chronic illness.
The period before her diagnosis was particularly taxing on Henri’s mental and emotional well-being. “I was often on high-dose steroids, my weight ballooned, my once super active, involved lifestyle was not possible and I was feeling exhausted much of the time,” she recounted. “I was more emotional and struggled with this new me who needed support instead of giving it.” However, receiving a diagnosis and starting appropriate treatment brought immense relief and renewed focus. “Now I knew what the battle was against. Now I could gather the correct tools and information to fight. I (with my doctors) could make a plan. I had hope.”
Henri is blessed with a strong support system. Her husband and son are “tremendous,” keeping her laughing and feeling cherished. A particularly heartwarming gesture was their gift of a new Corvette, an Elkhart Lake Blue 2023 ZR51, custom-labeled “Biondas Bella Blu”—a reward for her hard work in regaining her health. Her Canadian family and a close group of lifelong friends also provide meaningful support.
Henri recently experienced a flare-up, which forced her to cancel plans and scale back activities. During these times, her world “gets narrower.” She focuses on what works for her: diet, exercise (if possible), rest, and high-dose steroids. Even during a flare, she found a way to create cherished memories. With her doctor’s permission, she and her family embarked on a cross-country tour in their Corvette. “Our trip was deliberately low stress. For me, the opportunity to experience this memory-making trip with my husband and son was my focus. It was an incredible gift of time together.”
Henri finds invaluable resources in the VF, praising the staff, educational seminars, and the Vasculitis Patient-Powered Research Network’s (VPPRNs) research. Attending the International Vasculitis Symposium in Chicago a year after her diagnosis was particularly impactful. “For the first time, I could commiserate with others who truly understood the pain, the isolation, the fear that a vasculitis patient experiences,” she said. She also utilizes YouTube videos from doctors about EGPA to help her family understand the disease and employs Google Alerts to stay updated on scholarly articles.
Henri’s inherently positive and optimistic nature remains unchanged. She finds immense hope in the ongoing research and the dedication of doctors like Dr. Merkel and his team. “I look forward to the medical community being much more aware of the vasculitis diseases, thereby preventing, in some cases, years of unnecessary suffering,” she said.
A profound quote from Holocaust survivor Viktor Frankl guides Henri’s journey. “Forces beyond your control can take away everything you possess except one thing: your freedom to choose how you will respond to the situation. You cannot control what happens to you in life, but you can always control what you will feel and do about what happens to you.”
Henri is actively involved with the VPPRN and attends VF webinars and support group sessions. For those newly diagnosed with vasculitis, Henri recommends connecting with the VF. “If the learning curve feels too steep, reach out. The Foundation has a list of others who have your disease and are willing to provide guidance and support as well as the support groups.” She also stresses the importance of having a supportive medical team and, simply, “Be kind to yourself.”