• "Lupus Uncovered: What We’re Still Not Talking About"
    May 4 2025

    This powerful and informative script is designed for My Story Living with Lupus during Lupus Awareness Month. In it, host Susan Hendrix reflects on her personal experience living with systemic lupus erythematosus while educating listeners about the complexities of the disease. The script includes clear, reliable information about lupus, addresses common misconceptions, and brings attention to an often-ignored reality—the severe impact lupus has on African American men. With a compassionate tone and a call to action, the script encourages awareness, advocacy, and inclusive conversation around lupus.

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    10 mins
  • Let's Discuss Chronic Pain Syndrome with Dr. Jenny Tufenkian
    Jan 23 2025

    In this episode of My Story: Living with Lupus, host Susan Hendrix sits down with Dr. Jenny Tufenkian, a renowned expert in Naturopathic Medicine, to explore the complexities of Chronic Pain Syndrome and its impact on those living with lupus. Dr. Tufenkian dives deep into the physiological and emotional aspects of chronic pain, offering valuable insights on how it affects the body, mind, and daily life of individuals with lupus. She also discusses the latest treatments, coping strategies, and self-care techniques to help manage pain. Whether you're living with lupus or supporting someone who is, this episode provides essential information and compassionate advice to help navigate the challenges of chronic pain. Tune in for an enlightening conversation that blends medical expertise with personal understanding.

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    36 mins
  • Planning for Tomorrow: Advance Care Planning
    Jan 18 2025

    Living with a chronic illness teaches us to expect the unexpected. In this episode we discuss the topic of Advance Care Planning. It's not about giving up or focusing on the worst-case scenarios, it's about taking control, making your wishes known, and ensuring peace of mind for you and your loved ones.

    I's a very hard topic, but a necessary one.

    Feed Spot Links Top 100 Chronic Illness Podcasts on the web.
    https://podcast.feedspot.com/lupus_podcasts/
    https://podcast.feedspot.com/chronic_illness_podcasts/


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    14 mins
  • Living with Lupus: Figuring Out What's Going On
    Jan 17 2025

    Living with Lupus: Figuring Out What’s Going On

    In this episode, we dive into the complexities of living with lupus, an unpredictable autoimmune disease that impacts every part of life. From understanding the early symptoms to navigating the whirlwind of tests, misdiagnoses, and emotional challenges, this is about finding clarity in the chaos.

    Join me as I share my personal journey of discovering what’s happening inside my body, the questions I had to ask, and the lessons I’ve learned along the way. Whether you’re newly diagnosed, supporting a loved one, or just curious, this episode offers insights, hope, and encouragement for anyone on the path to understanding lupus.

    Let’s figure it out together!

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    16 mins
  • Unpacking Trump's Sentencing and Its Impact on Healthcare
    Jan 13 2025

    In this episode of Living with Lupus & Beyond, we delve into the implications of former President Donald Trump's sentencing, where a judge granted him an "unconditional discharge" to respect the presidency. What does this controversial decision mean for the United States, its policies, and those navigating chronic illnesses? We explore Trump’s stated plans to restrict coverage for pre-existing conditions, cut disability payments, and tighten Medicaid eligibility, highlighting how these changes could profoundly affect vulnerable populations. Join us as we unpack the political ripple effects on healthcare and discuss actionable steps to protect our rights and access to care.

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    11 mins
  • Speaking Life Into Yourself
    Jan 10 2025

    In this heartfelt and empowering episode of Living with Purpose, we explore the transformative power of speaking life into yourself when you feel there’s nowhere to turn. Discover practical strategies to acknowledge your feelings, harness the power of words, embrace gratitude, and reconnect with your inner strength. Featuring inspiring quotes from Maya Angelou, Oprah Winfrey, Rumi, and Nelson Mandela, this episode reminds you that tough times are just one chapter in your story. Tune in to rediscover your light and remember: you are never alone, and you are always enough.

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    11 mins
  • HMPV and Its Impact on Immunocompromised Individuals
    Jan 9 2025

    Human Metapneumovirus (HMPV) is a respiratory virus belonging to the Paramyxoviridae family, closely related to respiratory syncytial virus (RSV). Discovered in 2001, it is a common cause of upper and lower respiratory tract infections across all age groups but is particularly severe in vulnerable populations, such as young children, the elderly, and individuals with weakened immune systems.

    HMPV spreads through respiratory droplets, direct contact with contaminated surfaces, or close contact with infected individuals. Symptoms typically include cough, nasal congestion, shortness of breath, fever, and, in severe cases, wheezing or bronchitis. In immunocompromised individuals—such as those undergoing chemotherapy, transplant recipients, or those with autoimmune conditions—HMPV can lead to more severe complications, including pneumonia, respiratory failure, or secondary bacterial infections.

    The lack of specific antiviral treatments or vaccines for HMPV heightens the risk for these groups. Management relies on supportive care, including oxygen therapy and vigilant monitoring for complications. Preventative measures, such as rigorous hand hygiene, wearing masks, and minimizing exposure to symptomatic individuals, are critical to reducing transmission.

    Due to its potential for severe outcomes in immunocompromised individuals, early recognition and intervention are essential. Awareness of HMPV's impact can aid in improving health outcomes and guiding public health measures.

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    8 mins
  • Lupus and the Duffy Antigen-Unveiling the Connection
    Jan 3 2025

    The Duffy antigen, also known as the Duffy antigen receptor for chemokines (DARC), plays a critical role in immune system regulation and disease processes. It is a protein found on the surface of red blood cells and endothelial cells, known primarily for its function as a receptor for chemokines and its role in malaria resistance. However, emerging research has highlighted a fascinating link between the Duffy antigen and systemic lupus erythematosus (SLE), an autoimmune condition.

    In individuals with lupus, the immune system becomes overactive, targeting the body's own tissues and causing widespread inflammation. The Duffy antigen has been implicated in this process because of its role in modulating immune responses. Specifically, DARC binds to and regulates the levels of chemokines, proteins that guide immune cells to sites of inflammation. Dysregulation of this pathway may contribute to the heightened immune activity observed in lupus.

    Additionally, certain genetic variations in the Duffy antigen, such as the Fy(a-b-) phenotype, which is common in individuals of African descent, have been associated with altered susceptibility to autoimmune diseases, including lupus. These variations may influence the way the immune system interacts with chemokines and other inflammatory signals.

    Understanding the relationship between the Duffy antigen and lupus opens new doors for research, offering insights into the genetic and molecular underpinnings of the disease. This connection also holds promise for developing targeted therapies aimed at modulating immune responses in lupus patients, potentially improving outcomes and quality of life.

    By exploring the link between the Duffy antigen and lupus, scientists are unraveling the complex interplay between genetics, immune regulation, and autoimmunity, providing hope for better treatments and a deeper understanding of this challenging condition.

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    18 mins