World Lupus Day 2024: The Importance of Advocacy to Make Lupus Visible

World Lupus Day 2024: The Importance of Advocacy to Make Lupus Visible

Lupus, a chronic autoimmune disease where the immune system becomes hyperactive and attacks normal, healthy tissues, presents a spectrum of challenges that affect millions globally.

World Lupus Day, observed annually on May 10, serves as a powerful reminder of the ongoing battle against lupus, a chronic autoimmune disease that affects millions worldwide.

According to the Lupus Foundation of America, approximately 1.5 million Americans, and at least 5 million people worldwide, suffer from a form of lupus. The disease predominantly affects women, particularly women of color, who are two to three times more likely to develop lupus than caucasian women.

Despite its prevalence, lupus remains one of the world’s least recognizable diseases, often leading to significant delays in diagnosis and appropriate treatment.

Symptoms of lupus can range from mild to life-threatening, with the most common including severe fatigue, joint pain, rash and fever. These symptoms can be elusive and vary greatly from person to person, complicating the diagnosis process, which, on average, can take nearly six years or more from the onset of symptoms.

To understand more about the personal impacts of lupus and the crucial role of advocacy, Xtalks spoke with Yadira Castro, a dedicated Lupus Awareness Patient Advocate and member of Lupus Ontario and Lupus Canada.

The Catalyst for Advocacy

Yadira’s journey into the world of lupus advocacy began from a deeply personal place. “Well, I was diagnosed with lupus about ten years ago, and after being sick for about nine months and receiving several misdiagnoses, lupus had an incredible and severe impact on my life,” Yadira shared. “Unfortunately, because lupus does not have a cure, your treatment plan often consists of biological infusions, steroids and many immune suppressants,” she explained.

The constant threat of infections due to a compromised immune system, and the recurrent emergency situations that don’t always receive the urgency they require at medical facilities, highlight a significant gap in the healthcare system’s response to lupus patients.

“Many of us are denied coverage by insurance companies for disability, critical illness policies and even time off work or sick leave,” Yadira said, emphasizing the lack of awareness and frequent dismissal of lupus symptoms by the healthcare sector.

Related: Enhancing Lupus Clinical Trials with Real-World Data Sources

Making a Difference Through Advocacy

Driven by her experiences, Yadira has been an active participant in advocacy efforts, aiming to bring about change and hope for those affected by lupus. Her involvement in Lupus Ontario’s annual walk and other community events like Hope Volleyball has not only raised funds but also increased public awareness about the disease.

Her advocacy reached a legislative milestone with the passage of Bill 112, which officially recognizes May 10th as Lupus Awareness Day in Ontario and urges everyone to wear purple on this day to promote awareness of the condition. “I think that I was so overwhelmed with that emotion to have the opportunity to work on this initiative,” Yadira recounted, reflecting on the momentous achievement.

Make Lupus Visible: The Theme of World Lupus Day 2024

This year’s theme, “Make Lupus Visible,” emphasizes the crucial need to raise awareness and visibility of lupus on a global scale. It calls for increased recognition of the challenges faced by those living with lupus and the urgent need for broader understanding and support.

This theme particularly resonates with advocates like Yadira, who has experienced firsthand the disparities and misunderstandings surrounding this complex disease.

“Becoming an advocate just gives me that little hope that one day a cure will be found or that better treatments will become available and people will get a better response from our healthcare,” Yadira shares, highlighting the transformative power of increased visibility in driving change and fostering a more informed and compassionate healthcare environment.

Hopes for the Future

Looking ahead, Yadira’s aspirations for lupus research and care are both ambitious and necessary. “My biggest hope or wish would definitely be a cure,” she stated emphatically. The current treatment regimen, which often involves a plethora of drugs, leaves much to be desired in terms of efficacy and the avoidance of debilitating side effects.

More comprehensive healthcare, increased government funding for research and better support at the patient and family level are all critical to improving the lives of those with lupus.

Yadira’s story and her work as an advocate illuminate the often invisible struggles faced by those with lupus and emphasize the need for a more informed and compassionate approach to healthcare. As we mark World Lupus Day 2024, let us all reflect on how we can contribute to a better understanding and support system for those affected by this challenging disease.