S6, Ep 24- The Road to an IgG4-RD Diagnosis: How Nika Beamon Advocated

The Health Advocates are joined by Nika Beamon who lives with IgG4-related disease (IgG-RD), a group of fibroinflammatory conditions that can impact various tissues, often leading to tumor-like growth or organ dysfunction. Nika shares her 17-year journey to an IgG4-RD diagnosis, including how she advocated for herself. She offers valuable tips for fellow chronic illness patients, highlighting the unique considerations people with autoimmune diseases have in everyday life. “So there's so many things that do alter your life. But at the end of the day, you got one life, so you got to live it, and so I just choose to live it regardless of the fact that this is how it's built,” says Nika. Among the highlights in this episode:00:50: Nika gives an in-depth account of her health struggles, which began in college. She discusses her IgG4 symptoms like constant fatigue, joint pain, and spontaneous fevers, which baffled doctors for years 04:25: Nika emphasizes the importance of self-advocacy and the need for patients to have all their medical records organized 05:20: After years of suffering, a top rheumatologist identifies Nika’s condition, marking a significant turning point in her journey 05:35: Zoe Rothblatt, Associate Director of Community Outreach at GHLF, asks about Nika's reaction to finally receiving a diagnosis, underscoring the emotional impact of living undiagnosed for such a long period 07:46: Nika delves into her decision to write about her health journey and shares her personal experience of opening up to coworkers, revealing the challenges of living with a hidden illness 09:14: Nika discusses the complexities of diagnosing autoimmune diseases and the significance of patients being proactive, keeping detailed records, and ensuring doctors are listening to their concerns 13:01: Zoe emphasizes the challenges of managing a chronic illness, including the constant advocacy required, the need for continuous learning, and the difficulties in communicating with doctors 14:00: Nika discusses her experiences during the pandemic, especially the disparity between how she and others perceived the impact of illnesses like COVID 18:34: Nika emphasizes the importance of advocacy, surrounding oneself with a supportive community, and recognizing the disease as just a part of oneself 20:02: What our hosts learned from this episode This episode was made possible with support from Horizon Therapeutics. Contact Our Hosts Steven Newmark, Director of Policy at GHLF: [email protected] Zoe Rothblatt, Associate Director, Community Outreach at GHLF: [email protected] We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to [email protected] Catch up on all our episodes on our website or on your favorite podcast channel.See omnystudio.com/listener for privacy information.