Imagining the Carolina Lupus Alliance
Living with lupus comes with challenges that are often invisible to others, including chronic fatigue, brain fog, joint pain, organ involvement, and the emotional impact of living with a chronic illness. The Carolina Lupus Alliance exists to foster connection, education, and support among individuals affected by lupus throughout the Carolinas and beyond. Through shared experiences, evidence-based resources, and community engagement, we hope to help patients feel informed, understood, and less alone.
Our Story
The Carolina Lupus Alliance was founded by an individual living with Systemic Lupus Erythematosus (SLE) who recognized the challenges many patients face when trying to find reliable, relevant, and accessible information about living with lupus.
While excellent organizations and healthcare institutions provide comprehensive educational resources, patients are often left searching for practical information that addresses the realities of everyday life with a chronic illness. Questions surrounding fertility, family planning, mental health, fatigue, transition to adult care, medication decisions, employment, education, relationships, and long-term planning may not always be discussed in depth during routine healthcare visits.
The Carolina Lupus Alliance was created to help bridge that gap.
Our goal is to make current, peer-reviewed lupus research more accessible by translating complex scientific findings into clear, patient-friendly information. We focus on topics that patients and families identify as important through their lived experiences, while grounding our educational content in reputable research and evidence-based practice.
In addition to education, we believe that lived experience is a valuable form of knowledge. By sharing patient stories and fostering community connections, we aim to create opportunities for individuals to learn from one another, feel less isolated, and better navigate life with lupus.
The Carolina Lupus Alliance does not replace medical advice or professional healthcare. Rather, we seek to serve as a community-centered resource that connects patients with evidence-based information, promotes awareness, encourages advocacy, and supports informed decision-making throughout the lupus journey while forming community across the Carolinas.