At the National Corticosteroid Stewardship Summit in Washington, DC, on September 22, 2026, topical steroid withdrawal (TSW) patient advocate Briana Banos called on clinicians to take patient-reported experience seriously and speak candidly about treatment constraints to improve patient-clinician communication.
Banos spoke on the panel “The Patient Experience: Navigating Corticosteroid Use, Burden, and Unmet Needs” at the summit, hosted by the Corticosteroid Stewardship Alliance. TSW remains a contested diagnosis, recognized by some dermatologists as a distinct entity and dismissed by others as a severe or undertreated atopic dermatitis flare.1
“At the end of the day, we are experts on our body,” said Briana Banos, a documentary filmmaker based in Edinburgh, Scotland. Banos described patient participation at events such as the summit as validating, since it places patients in the same room as clinical experts who are willing to listen.
From Patient With Eczema to Topical Steroid Withdrawal Advocate
Banos has lived with eczema since childhood and described herself as having limited health literacy before TSW. For most of her life, her care followed a simple pattern: she visited the doctor, received a recommendation, and followed it.
Her TSW experience, which began in 2015, changed her approach.2 She began documenting her symptoms immediately and sharing them on YouTube, and the channel grew into documentary work.
Her first feature-length film, Preventable: Protecting Our Largest Organ (2019), was the first documentary produced on TSW.3 The 2024 sequel, Still Preventable, addresses prevalence, resistance within the medical community, parental pressures, and prevention.4
Asked how she balances public storytelling with her own privacy and mental health, Banos acknowledged the balance remains difficult after more than a decade of advocacy. Early on, she felt a strong sense of responsibility to her community. She now keeps topics such as dating and intimacy private but continues to share openly about her health hurdles and emerging research.
Community Support and Patient-Clinician Communication in TSW
Banos identified the patient community as her most consistent source of support. She described her own encounters with health care providers as “hit-and-miss,” though she has interviewed many clinicians she considers excellent.
The community, by contrast, offers steady encouragement and practical guidance clinicians often do not provide, including bandaging techniques and clothing choices such as cotton garments. Banos acknowledged social media has drawbacks but said peer connection remains a source of comfort for many patients.
On communication, Banos stressed recognizing the humanity of both parties, given the pressures on patients and clinicians alike. She noted a 5- to 10-minute visit leaves little room for a provider to grasp the weight of TSW consequences. Patients, in turn, often arrive seeking a degree of agency in their treatment decisions.
"It's just going to a patient and saying, 'How can I help you? What are you here for?’ hearing them out, and then just being humble in the sense of, 'Hey, my hands are tied here. This is what we can and can't do. How can we both find a way forward with it?' That would be very helpful,” Banos said.
Advice for Clinicians on Patient-Reported Experience
Banos asked clinicians to lean in when a patient's account seems unusual, since science continues to evolve beyond formal training. Symptoms a patient raise may appear unrelated yet prove relevant, and she encouraged providers to document them and weigh them in clinical decisions. She noted patients live with their conditions around the clock and carry the consequences home after each visit.
“A little bit more compassion and curiosity would really open us up to engage more,” Banos said.
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