As a leader and compassionate physician in the field of dermatology, Dr. Ilona Frieden has focused her research and clinical expertise on pediatric dermatologic conditions, such as vascular birthmarks. As a result of her work, she has paved the way in changing how these conditions are perceived and treated by both patients and providers. In her 2025 San Francisco Dermatology Society annual meeting presentation, Reflections on the Impact of Birthmarks and Facial Disfigurement: Lessons for Dermatologists, she shared the story of her career, highlighting the key individuals who shaped her path, the lessons she learned along the way, and the insights that continue to guide her work as she leads advancements in our understanding of pediatric dermatology.

Dr. Frieden’s Journey in Medicine

Dr. Frieden began her training in pediatrics, where she learned about hemangiomas and their benign nature. She later went on to train in dermatology, where she would participate as a resident in the “hemangioma clinic,” in which the strong dogma was a “hands off” approach. These initial experiences in dermatology practice spurred her to think more deeply about this topic and piqued her interest in hemangiomas.

The “Hemangioma Clinic” At UCSF

Founded by Dr. Frances Torrey, MD, the “Hemangioma clinic” was started at UCSF in 1949 with the major mission: to prevent unnecessary radiation to patients with hemangiomas. Dr. Frieden was a resident in this clinic in the early 1980s (it closed a few years later). As she progressed to a full-time faculty member, she was part of the effort to revive it as the “UCSF Birthmarks and Vascular Anomalies Clinic” in 1991.

Dr. Nancy Esterly: A Pioneer

Dr. Nancy Esterly, regarded as the “Mother of Pediatric Dermatology,” was a student of hemangiomas and other vascular birthmarks and one of the first to describe the use of corticosteroids in the treatment of infantile hemangiomas (IH) in 1968. Towards the end of Dr. Frieden’s training, she traveled to Chicago to work with Dr. Esterly, who became her mentor and a mentor to many pediatric dermatologists.

Dr. Frieden’s Journey of Understanding of Infantile Hemangiomas

After completing her dermatology training in 1983, Dr. Frieden understood that infantile hemangiomas were common benign tumors that were more frequent in females. They had the characteristic natural history of growth followed by involution (thought of as “going away”), with a 10% per year rule for involution. She also knew that radiation was a bad option for treating IH. A “hands off” approach was still the central dogma in the treatment of IHs, unless they were truly life or function-threatening. The leading thought at the time was, “Why treat something that will go away on its own?” and IHs were considered “benign”, except in rare instances.

However, shortly after finishing residency, Dr. Frieden began to question this approach. One particularly memorable patient was an infant with a cheek IH. Following the standard dogma of no treatment, Dr. Frieden provided reassurance until the patient’s mother called a few days later informing her that the IH was “like an exploding volcano.” It was located on the central face and had begun to ulcerate.

Upon reflection on the current understanding of hemangiomas, Dr. Frieden turned to both her mentor, Dr. Nancy Esterly, and the medical library to learn more. In the literature, she found an article by Dr. Hiroko Nakayama, “Clinical and Histologic Studies of the Classification and the Natural Course of the Strawberry Mark”, which showed many pictures of residual tumors and facial disfigurement of IHs that were not treated. She began to realize that larger IH, particularly on the face could confer a significant risk of scarring and anatomic distortion.

Turning to the Parents of Infants with IH

Inspired by what she learned, Dr. Frieden ventured to explore the experiences of patients of infants with IH through a research project interviewing 25 parent(s) of children with facial IH deemed to be potentially disfiguring. These interviews were organized into common categories and themes:

• Parental emotion and adaptation
• Experiences with public reactions
• Issues related to parent/child interactions
• Expressed satisfaction or dissatisfaction with medical care

She found that parents had reactions that were similar to publications describing parental reactions to permanent structural birth defects, expressing fear, disbelief, and mourning during the growth phase. Parents were also forced to confront aspects of social stigmatization from reactions of strangers. Approximately half of parents in the study expressed dissatisfaction with aspects of medical care received.

Lessons Learned from Her Journey:

Dr. Frieden shared two major lessons. The first is to question dogma. Rather than believing everything you read or hear, be a careful observer who is aware of cognitive dissonance from the discomfort between what you learned and your own experience telling you otherwise. She shared that this is the “secret power” of dermatologists. The second lesson is to collaborate with others. There is power in collaboration and talking and working with colleagues.

By following these two lessons, Dr. Frieden contributed to a major change in how we manage IH. Now, more than half of patients with IH seen in a referral setting (e.g. a pediatric dermatology clinic) are treated to prevent permanent scarring from hemangiomas.

Important Lessons from David Roche

David Roche, a patient of the hemangioma clinic, is an author and performance artist who has shared his story as an individual with facial disfigurement. Through his memoir, “Standing at the Back Door of Happiness and How I Unlocked it,” and his performances, David creates a space to hear and connect to his experiences.1 One of the takeaways Dr. Frieden has learned from David Roche is that most of us carry around our own sense of self-consciousness and feelings that some part of our body is not “right” or even shameful or embarrassing. As providers, we must acknowledge this as a common feeling. This can increase our compassion for dermatology patients with visible skin changes.

The Work of Frances Cook Macgregor

Frances Cook Macgregor, a medical anthropologist, studied and described “civil inattention,” which is the privilege longed for by people with facial disfigurements. Through studying severe facial war injuries and the impacts they have on patients, she found that normal eye contact is impaired in the setting of facial disfigurement.2 She described how individuals with facial disfigurement are unable to conceal their handicaps, and frequently experience intrusions and invasions of privacy, against which they have little or no protection.2

Key Lessons and Takeaways

Reflecting on her journey, Dr. Frieden shared key lessons that all providers should consider in their practice.

1. Stigma from disfiguring conditions is an important part of dermatology
2. Physician self-awareness is key. We must understand what our concerns and biases are and how they impact our approach to patients.
3. Awareness that stigma is a part of the journey of many patients can help us be better physicians and caregivers.

How we can use these insights in patient care:

• Be aware of our own vulnerabilities
• Figure out how to approach topics of stigma/disfigurement with language that can allow them to express themselves (e.g., asking open-ended questions). Recognize the role as a healer, even when we cannot cure
• Discuss common reactions that the public may have towards IH/disfigurement
• Provide strategies for dealing with rude comments
• Refer patients to patient advocacy groups
• Understand the role of mental health professionals