Building Community Through Knowledge and Support: The Second Annual Duke Lupus Event

The second annual Duke Lupus community event, "Building Community through Knowledge and Support," was a tremendous success, bringing together individuals living with lupus, their loved ones, and healthcare professionals for a day of education, shared experiences, and connection.

A vibrant crowd of 83 people living with lupus, friends, and family members, three community organizations alongside 19 Duke clinicians and staff fostered an environment of mutual understanding and support. Held at the University Club in Durham on  Sept. 13, the all-day event was made possible through the generous sponsorship of AstraZeneca and Aurinia.

Led by Duke Lupus Clinic Director Dr. Jennifer Rogers, the agenda highlighted topics important to people living with lupus.

Featured speakers included dermatologist Dr. Mattie Nicholas and psychologist Dr. Keisha O’Garo with a diverse range of sessions from several Duke Lupus Clinic faculty members, Drs. Rebecca Sadun, Mithu Maheswaranathan, Nathaneil Harris, Kai Sun, and Megan Clowse:

• Empowering Wellness: A health coach with extensive experience with lupus shared strategies for managing well-being.
• Specialized Insights: Duke faculty addressed key aspects of the condition, including cutaneous lupus, kidney disease, managing medication, understanding labs, pain and fatigue management, and addressing psychological comorbidities.
• Patient Voices: A powerful patient panel featured three individuals living with lupus who shared their personal journeys and extensive experiences.

The event's impact was clearly reflected in post-evaluation surveys. Nearly all respondents reported feeling empowered upon leaving the event, and over 90% were satisfied with their ability to connect with others living with lupus.

A significant highlight was the valuable experience shared by patients and their loved ones who attended together. Over half of the respondents had brought a loved one, and both found the joint attendance beneficial.

Voices from the Community

Attendee feedback underscored the profound impact of the day:

• "I felt very happy meeting other people living with Lupus and listening to other people giving their stories... I felt so great I feel that I am not alone anymore."
• "It gave my husband a better understanding of what Lupus is and what I go through when I’m in a flare." 
• A loved one appreciated "that he learned about lupus from doctors and patients rather than, let’s say, Google or Reddit." He noted that "everyone who has lupus at the event looks healthy," which helped him better understand invisible illnesses and the complexities and unknowns surrounding lupus.

The second annual Duke Lupus Community Event successfully achieved its goal of building a stronger community through shared knowledge and support, leaving participants feeling more connected, informed, and empowered in their journeys with lupus, Dr. Rogers said.