Lupus Remission: A Gradual Journey, Not an ‘Aha!’ Moment

For many living with chronic illnesses, the idea of remission often conjures images of a sudden, dramatic turning point – an ‘aha!’ moment. But for Hazel Harris, who has been in remission from lupus for 25 years, the reality was far more gradual. Her journey highlights the nuanced path to managing lupus and the importance of ongoing research, especially for Black women who are disproportionately affected by the disease.

Navigating Lupus: From Diagnosis to Stability

Hazel was diagnosed with lupus at age 33 while pursuing a psychology degree. The initial symptoms were debilitating: facial rashes, severe joint pain, and overwhelming fatigue. Living in the Bronx at the time, she underwent tests that revealed the autoimmune disease she had never heard of before. While medication helped manage the symptoms, painful flare-ups, swelling, and difficulty walking often led to hospital visits.

Over time, the frequency and severity of her flare-ups decreased, and she eventually entered remission. Remission means having lupus but experiencing no active symptoms, a state Hazel has maintained for a remarkable 25 years. This stability wasn’t achieved overnight but through a slow process of her body adapting to medication and the disease’s natural course.

A New Path: Clinical Trials and Research

A significant turning point in Hazel’s journey came after she moved to Queens and found a doctor specializing in lupus care. This connection led her to participate in a major NIH-funded study focused on patients in remission. The international research, involving scientists from the U.S., U.K., Mexico, Ghana, and South Africa, aims to identify the biological markers of true lupus remission.

Researchers are examining immune cells, brain activity, and gut bacteria to understand why some individuals remain in remission while others experience relapses. Dr. Betty Diamond, the lead investigator, emphasizes the study’s goal: to learn how the immune system rebalances itself and to improve current treatments, which often have significant toxicities.

Understanding Lupus’s Impact on the Brain

The research is also shedding light on how lupus affects the brain, contributing to cognitive and mood-related issues. Dr. Diamond notes that current treatments don’t always fully address these neurological symptoms, which patients have long known are part of the disease, not just ‘in their head.’ Even in remission, subtle signs of brain involvement can persist, potentially indicating a higher risk of relapse.

By studying individuals like Hazel, researchers hope to pinpoint factors that contribute to long-term remission and develop strategies to prevent relapses, ultimately improving the quality of life for those living with lupus.

Living Fully and Inspiring Others

Now 72, Hazel has been in remission for 25 years. Her joint pain and facial scars have disappeared, and she enjoys activities like walking, Tai Chi, dancing, and spending time with friends. More profoundly, her experience with lupus has fostered a deep sense of empathy and patience.

She hopes her story, particularly her gradual path to remission, can raise awareness and encourage other Black women to recognize potential lupus symptoms and seek medical help. Hazel’s message of hope is clear: with knowledge, support, and resilience, living fully with lupus is possible, and contributing to research can make a significant difference for future generations.