QU Pre-Matriculation Program: Insights from the Lupus Patient Panel
Updated: Jul 20
Living with lupus presents various challenges and complexities. In this blog post, we explore the experiences of Chris, Karin, and Traci, who shared their insights and strategies for managing lupus symptoms and its impact on their lives. We delve into their discussions, highlighting symptoms, complications, and encounters with the healthcare system.
Meet the Panelist
Karin Wagner is the founder of Invigorate, a central place of resources for people with autoimmune diseases. She has been living with Lupus for 15 years and helps others live full lives while living with an autoimmune disease.
Chris Burton is a writer and Lupus advocate from Brooklyn. Chris has firsthand experience with the challenges of living with Lupus for over 11 years. As an ambassador for the Lupus Foundation of America, he actively raises awareness and supports the Lupus community.
Traci Szoke is a student at the University of Central Florida. Traci's mother has been living with lupus since Traci's birth. Growing up, Traci witnessed her mother's strength in the face of lupus, leading her to become a passionate advocate for raising awareness and improving the lives of those affected by the disease.
Understanding the Challenges:
During the panel discussions, Chris, Traci, and Karin shared their daily struggles with lupus symptoms. These symptoms range from persistent fatigue and joint pain to more severe complications like strokes and organ damage. Their personal stories reveal the unpredictable nature of the disease and its profound impact on physical and emotional well-being.
For example, Traci mentioned her mother's constant fatigue and the realization that something was seriously wrong when her mother suffered a stroke. Karin discussed her experiences with additional symptoms such as pericarditis and pleurisy, which caused scarring on her heart and lungs. Chris shared his journey, including hair loss, profuse sweating, pneumonia, and lung clots. These firsthand accounts highlight the wide-ranging effects of lupus and emphasize the need for greater understanding, support, and holistic care for patients.
The Evolution of Healthcare for Lupus Patients:
Chris and Karin discussed their experiences with lupus over the years, focusing on improvements in the healthcare system for lupus patients. They stressed the importance of building strong relationships with healthcare providers and addressed existing inequities in the system. The panelists also expressed concerns about the long-term effects of lupus medications.
Karin expressed optimism about advancements in lupus awareness and education since her diagnosis in 2007. She highlighted the faster diagnoses and better disease control made possible by increased awareness. However, Karin also acknowledged the difficulties she faced before her lupus was under control, including life-threatening complications. Karin's experience underscores the critical importance of timely diagnosis and effective treatment.
One challenge for lupus patients is the potential long-term effects of medications. Karin shared her journey with high-dose prednisone, which led to avascular necrosis (when bone tissue dies due to insufficient blood flow) and the need for multiple joint replacements. However, she noted that progress has been made in understanding and managing the disease. Karin emphasized the availability of better medications and more options, though finding the right balance remains a challenge.
Traci described her mother's challenging journey to diagnosis, which involved multiple health issues and hospital visits. It wasn't until her mother was pregnant with Traci in 2001 that she finally received a lupus diagnosis. Traci's account highlights the frustrating reality of delayed diagnosis and the importance of proactive healthcare practices and improved diagnostic methods.
Chris shared an intriguing perspective from his rheumatologist, who told him, "This is the best time in human history to have lupus." He gradually understood that medical breakthroughs specific to lupus have significantly expanded treatment possibilities. Chris believes that future generations won't have to endure the same difficulties, such as high prednisone dosages, as Karin did. Looking ahead, he emphasized the relief provided by these medical advancements and their positive impact on the well-being of lupus patients.
The discussion between Chris and Karin revealed ongoing challenges and improvements in lupus care. Timely diagnosis, disease management, and addressing long-term medication effects are vital concerns. While progress has been made, further advancements are necessary. By raising awareness, supporting research initiatives, and fostering open dialogues, we can work towards a future where lupus patients receive the best possible care, minimizing the burdensome side effects of medications. Together, we can navigate the journey of lupus and provide hope for a brighter tomorrow.