After struggling for six years with unrelenting rashes, swelling, fevers, and severe pain, Ruth Wilson finally found the answers she had sought. It wasn't until a last-ditch effort in an emergency room led to a critical test that revealed her kidneys were failing due to lupus, an autoimmune disease that can ravage the body in numerous ways.
I wish there was a better way for patients to receive diagnoses without facing dismissiveness or gaslighting, Wilson, who is now 43, reflects on her painful journey.
Lupus is known as the disease of a thousand symptoms and is part of a growing epidemic of autoimmune disorders affecting millions globally. Recent research by scientists, building on newfound insights from cancer research and the COVID-19 pandemic, is beginning to unravel the mysteries of these debilitating conditions.
Scientists are now working to uncover biological pathways that trigger various autoimmune diseases, aiming to treat the root causes rather than merely addressing the symptoms. Innovative therapies utilizing patients' own immune cells, known as CAR-T therapy, have shown promising results in preliminary studies. The NIH’s new plan for autoimmune research is pushing to discover similar breakthrough treatments.
Despite the advances, lupus remains a daily struggle for Wilson. Her disease can challenge her spirit and often interferes with her responsibilities at work and at home. Yet in the face of ongoing challenges, she dedicates her time to educate others about lupus.
Wilson recalls when she was invited to speak to medical students about her experience. It dawned on her that many medical professionals were familiar with the textbook definition of lupus but didn’t truly understand its impact on a patient's life.
“I’ve learned so much, and I want to share that knowledge to help improve others’ experiences,” she says, emphasizing the importance of communicating the patient perspective to researchers and health care providers.
Wilson continues to fight through her treatment regimen, including a monthly IV therapy that targets lupus specifically. While the road to understanding and managing autoimmune diseases is long and often frustrating, she hopes to lead a spirited advocacy effort that rallies attention and funding to find more effective treatments and perhaps even cures.
