On June 15, 2026, members of UNC-Chapel Hill’s Health and Humanities: An Interdisciplinary Venue for Exploration (HHIVE) Lab were able to speak with Tracy about her experience living with Ramsay Hunt Syndrome (RHS). We highlight Tracy's story below, focusing on her initial symptoms and diagnosis, path to treatment, and mental health. Tracy also shares profound insights about what she’s learned during her RHS journey and offers words of hope for those experiencing RHS.

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Tracy’s RHS journey began in January 2025 with what many of us would consider to be an everyday occurrence. She woke up after dozing off one evening and got up to brush her teeth before heading to bed. But when she looked in the mirror and started her nighttime routine, she noticed something was off. She was struggling to open her mouth all the way and was also starting to have ear pain. Within a ten-to-twelve-hour timeframe, she started to experience another telltale sign of RHS: facial paralysis. In the days and weeks that followed, Tracy’s life would change in ways she’d never imagined.

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Tracy’s road to getting a diagnosis took longer than expected, spanning about three months from the onset of her symptoms to being diagnosed with RHS. Concerned about her initial symptoms, she arrived at a local hospital where she was initially misdiagnosed with Bell’s palsy. There was also concern that she may have Heerfordt syndrome because of her history with neurosarcoidosis, a chronic inflammatory condition that can affect the facial nerve. After a chain of referrals, Tracy was able to see Dr. Jonas Miller at Ochsner Medical Center in New Orleans in April of 2025, where he diagnosed her with RHS, using the rash she had developed in her ear as a major clue that she had the disorder.

Following her diagnosis, Tracy was started on a 10-day treatment of antiviral medication and prednisone to reduce inflammation, along with vitamin B-12 for energy. These medications were helpful in the short term, but she described acupuncture, which she began in March 2025, as her “saving grace,” saying that for her it helped improve facial function and keep stress at bay. Tracy also incorporated facial exercises into her routine a few times per week, and she found them incredibly beneficial. Reflecting on her treatment journey, Tracy feels that the rarity of RHS contributed to a lack of familiarity with the condition when interacting with healthcare providers, as she received multiple referrals before receiving an accurate diagnosis. As a result, she wishes more medical providers were informed about the condition. She also expressed appreciation for the Ochsner Foundation and Dr. Jonas Miller and Dr. Laura Hetzler, who worked together to guide her treatment.

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Tracy’s life changed significantly, both socially and emotionally, as a result of RHS. Friends and family had come to identify her by her “pretty smile” and “pretty teeth,” as she told us. It was hard to see her face change, especially since it’s the first thing people see when meeting her. Following her diagnosis, she didn’t go out to social gatherings or out to eat, as she was concerned about sipping through a straw and hypersalivation, both common struggles for RHS patients. She credits her therapist as being an especially helpful pillar of support when she was dealing with stress from these rapid changes. Her therapist saw her at some of the most traumatic moments and helped her navigate the major changes and accept the aspects of her life with RHS she couldn’t change. Tracy states that if you don’t have a support system, tackling ongoing recovery can be hard. Rest and building a support system of family, physical therapists, doctors, and others has helped Tracy navigate life with RHS. 

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Tracy’s story is one of persistence. When she realized that not many people around her understood RHS, she was determined to find answers. She describes much of her recovery as involving self-help, spending time researching the condition, joining Facebook support groups, asking questions at every appointment, and traveling to specialists who could help her better understand what she was going through. As she learned more, she even found herself sharing that knowledge with others, including a family member who later experienced Bell’s palsy. Tracy hopes that by sharing her story, more people will recognize the signs of RHS sooner and that healthcare providers will continue learning about this rare condition because, as she explained, “not a lot of information is out there” in every medical community. However, this is starting to shift as a result of the ongoing research and discourse on the disease, which is leading to more resources and information for patients. Tracy’s smile has always been her trademark, and throughout her recovery, her motto has remained the same: “I just want my smile back.” For now, she reminds herself to take things one day at a time, all the while believing that anything can happen.

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