A New Era of Wellness for Young People with Chronic Conditions
For young people living with chronic illnesses, the idea of "normal" can feel like an impossible dream. When these children and their families were asked about their greatest need, their answer wasn’t a cure or even symptom relief—it was hope.
“Traditional views of hope often focus on a return to a 'normal' state. For people with chronic illness, this narrow definition is often unrealistic and can make a fulfilling life seem out of reach,” said Emily von Scheven, MD, Chief of the Division of Rheumatology for the Department of Pediatrics at UC San Francisco.
Recognizing this, von Scheven set out to reshape what hope means for these young patients, launching the UCSF Wellness Center for Youth with Chronic Conditions in 2016, an outpatient clinic where a team of specialists helps patients discover what it means to have illness and wellness at the same time.
Here, hope is not tethered to unattainable ideals but grounded in the possibility of thriving while living with illness. The center fills a critical gap in the lives of young people with long-lasting medical conditions by providing a dedicated space to define and pursue their version of wellness. Through consultations, community events, and special fitness, nutrition, and adolescent health programming, the center aims to set patients up for a life that’s more than their illness.
A Dedicated Space for Wellness
“Wellness looks different for everyone. Our first meeting with patients is a 75-minute conversation where we talk about what matters most to them and what they want more of in their life,” said Sydney Gressel, a nurse practitioner at the Wellness Center. “From there, we organically create a personalized plan with goals that offer direction and hope.”
For some, wellness involves self-care basics: eating well, exercising, and getting proper sleep. Others are looking to bring more art and socialization into their lives. Some patients ask for support tackling things they’re putting off, especially as they move toward independence.
Approaching the Shift to Adulthood
The transition to adulthood is challenging for any teenager, but for those growing up with chronic health conditions, it can feel overwhelming. Leaving a parent’s home, moving to a new city, finding new providers, navigating insurance, and managing growing responsibilities often leads to disease flare, debilitating anxiety, or even trauma responses.
“So much can go wrong during this critical time,” said von Scheven, the Wellness Center’s Medical Director. Gina Kossler, MSW, a social worker at the center, recalls a young adult patient grappling with the daunting task of finding a new endocrinologist. “Breaking these overwhelming problems into manageable steps can completely change their perspective,” Kossler said.
In addition to one-on-one support, the center offers educational and social community events that help families navigate these transitions, prepare for new challenges, and connect with others who truly understand their experiences.
The Power of Community
“During the early stages of research, something remarkable happened. Many of the families from our focus groups spontaneously connected with each other for support. Witnessing the positive impact of these connections, we’ve integrated community parent discussions into our programming at the Wellness Center,” said von Scheven.
The center hosts a series of six community discussions on specific topics, including “explaining my child’s disease to others” and “parent self-care.” Patients can participate in hands-on cooking classes and healing arts workshops designed to build independence.
A Bright Future for the Wellness Center
The Wellness Center is expanding to a new space in January 2025 in the UCSF San Francisco Outpatient Center on the Mission Bay campus, which includes a community space so von Scheven and her team can continue to build the program and bring these events in person.
“With continued advances in medical care, more and more children are living their lives with long-lasting medical issues. For many of these young people, nobody is talking about wellness. In addition to providing care for their body, we believe that it is important for these young people to have dedicated conversations about wellness so they can create an achievable vision of what their best life can look like,” said von Scheven.
You can help empower people living with chronic conditions: register for events, find referral details, and learn more from the UCSF Wellness Center for Youth with Chronic Conditions website.