In our ongoing quest to connect with organizations dedicated to making a difference in the healthcare landscape, the Northwest Kidney Council recently had the privilege of sitting down for a phone interview with Greg Dardis, director of programs at Kaleidoscope Fighting Lupus (KFL). KFL is a nonprofit organization with a mission deeply rooted in education, support, and outreach. It's their unwavering commitment to these principles that has made a significant impact on the lupus community and beyond — and why we value their partnership so much.
Greg's journey with KFL began in 2015. As a teacher of anatomy and physiology, he had a solid foundation in understanding autoimmune conditions, and though lupus was somewhat of an uncharted territory for him, autoimmune conditions were of increasing interest to his students. Intrigued to know more, he started volunteering at KFL events after interacting with a colleague who was serving as Executive Director, and eventually found himself serving on the Board of Directors in 2017.
Over the years, Greg transitioned into a role as the director of programs, taking charge of support groups, online advocacy, outreach programming, writing blog articles, and producing educational videos – all essential components of KFL's mission to educate, support, and raise awareness about lupus.
Lupus is an autoimmune disease where the body's immune system attacks its own tissues and organs. 90 percent of those diagnosed with lupus are women and at least two-thirds are women of color. Greg explains, "So little was known about autoimmune conditions and they were not often emphasized in a classroom setting. Lupus, in particular, wasn't well-known."
This lack of awareness was the driving force behind KFL's commitment to education, with a focus on providing useful information for patients, healthcare providers, and the general public. Their early efforts were concentrated on developing and leveraging online platforms, social media, and creating educational videos to increase awareness of lupus and the latest research.
KFL is also deeply involved in advocacy. They have consistently pushed for increased funding for lupus research, given that lupus had been significantly underrepresented in research compared to other chronic conditions. Their efforts successfully helped advance funding through the National Institute of Health and the Department of Defense, which made lupus one of its new research initiatives a few years ago. In fact, Greg and the KFL team went to Washington, DC several times to advocate for this funding.
In addition to their national advocacy efforts, KFL has established vital local support groups and an Emergency Client Assistance Program to help individuals facing financial difficulties due to their lupus diagnosis.
Lupus presents a diagnostic challenge, with an average diagnosis time of six to seven years. It often involves eliminating other potential causes, as there's no single definitive test for lupus. Greg emphasizes the importance of finding a support group and educating oneself to make the most out of the limited time with healthcare providers. Knowing the right questions to ask and sticking to the recommended treatment plan are crucial steps for those dealing with lupus.
There are many types of lupus, the most common being systemic lupus erythematosus or SLE. While each individual's experience with lupus can be unique, the disease can affect the skin, lungs, heart, brain, and, significantly, the kidneys. Lupus nephritis, characterized as a “kidney involvement,” can affect up to 50% of those with lupus. It is one of the most dangerous aspects of lupus and can be life-threatening.
The conversation with Greg highlights the interconnectedness of different healthcare communities, particularly when it comes to conditions that may impact such vital organs like the kidneys. While the kidney community deals with a broad spectrum of kidney-related issues, there's a significant overlap with the lupus community, as kidney involvement is a common feature of lupus.
That is why the Northwest Kidney Council collaborated with KFL on a 2022 video that featured Dr. German Hernandez, MD, titled “What Nephrologists Want You to know about Lupus Nephritis.” The video does an excellent job explaining the ins and outs of how lupus impacts the kidneys, and we encourage everyone to take a look.
Greg also suggests a variety of ways these communities can support one another. First, there's a need for increased funding for research into how various conditions impact the kidneys. Second, improving access to medications, especially for conditions like lupus, where specific drugs are scarce, is a priority. And finally, simplifying partnerships and promoting cooperation among nonprofits and organizations to ensure a consistent approach to education and funding for patients will go a long way.
Greg shares personal anecdotes about the power of support groups and the immeasurable relief that comes from connecting with others who have faced similar challenges. The sharing of knowledge and experiences in these groups can be invaluable for those recently diagnosed or facing lupus. He encourages patients to be proactive in their healthcare, educate themselves, and maintain consistent adherence to their treatment plans.
In a healthcare landscape marked by complexity, collaboration between different healthcare communities can lead to more comprehensive support and more effective advocacy. The conversation with KFL highlights the importance of working together to create a more robust and interconnected healthcare ecosystem that serves everyone's needs.