Новая директорка сети Narcolepsy Network призывает врачей лечить не только симптомы, но и качество жизни пациентов с нарколепсией

Quality of life sometimes depends on addressing the challenges that medication cannot fix. By Sree Roy I recently spoke with Liz Burgess, the new executive director of Narcolepsy Network, who took the helm during the organization’s 40th anniversary. Her appointment comes at a pivotal time, with the first orexin agonists marking what she calls a “historic shift in the sleep disorder space” for treating the root cause of narcolepsy type 1. But our conversation quickly moved beyond pharmacology to the human side of care—the part that happens after a patient leaves the clinic with a new prescription. It’s the part of the treatment plan that is too often missing. Burgess made a distinction that has stuck with me. “Physicians and medical treatments stabilize the condition. But the community helps stabilize the patient—emotionally, socially, and practically,” she said. This highlights the gap between medical management and lived experience. While clinicians focus on titrating medications and monitoring side effects, patients are left to grapple with how to navigate work accommodations, drive safely, manage family dynamics, and handle intimate relationships—challenges that medications don’t solve. Every clinician has seen patients disengage from their care. Burgess suggests this often happens when patients feel powerless. After the diagnostic hurdles are cleared, patients face a daunting question. “So you’ve been diagnosed, you’ve been sent home with meds, now what?” she asked. The answer, she argues, can’t simply be a follow-up appointment in six months. It needs to include an immediate connection to a community where they can “find their people” and get practical, trial-and-error advice from others who have walked the same path. Even a historic therapeutic shift has its limits. A pill can tweak brain signaling, but as Burgess emphasized, it doesn’t necessarily fully erase the daily challenges of living with narcolepsy. It doesn’t solve “job discrimination…school accommodations, driving anxiety, the isolation, and the stigma about living with a chronic, almost-invisible condition.” This brings me to the message Burgess most wanted every sleep physician to hear. “Look past all the sleepiness scores and treat the full life in front of you,” she urged. “Symptom control is not the same as quality of life.” Organizations like Narcolepsy Network also provide resources for family members of people with narcolepsy, which goes beyond what can typically be accomplished via medical care. Her point is a powerful call to action. Patient advocacy and support groups are not just a helpful adjunct; they are a core component of a holistic treatment plan that should begin on day one. By handing a newly diagnosed patient a brochure for an organization like Narcolepsy Network, practitioners are directing patients toward community, compassion, and the lived experience that complements clinical expertise. “We want to be there to work together as partners with their care team,” Burgess concludes. “They provide the medical expertise, and we can help provide that lived experience support that patients need.”