Untold Stories: Life with a Severe Autoimmune Condition

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Untold Stories: Life with a Severe Autoimmune Condition

For people diagnosed with a rare, autoimmune condition like myasthenia gravis (MG) or chronic inflammatory demyelinating polyneuropathy (CIDP), life can change in the blink of an eye. But these conditions affect everyone differently, and each person has a story to tell. Welcome to “Untold Stories: Life with a Severe Autoimmune Condition,” a Ruby Studio from iHeart Media production in partnership with argenx. Host Martine Hackett has real, eye-opening conversations with people living with rare, autoimmune conditions ranging from MG to CIDP. Learn about the hardships of diagnosis and each person’s journey towards wellness. Understand the challenges they continue to overcome as they discover how to live with these conditions and persevere through the tough times. Plus, hear from the family members and friends who stand by them every day and play important roles in their care.

  1. ٢٠‏/٠٤‏/١٤٤٦ هـ

    Harnessing Hope: Life Beyond Autoimmune Conditions

    For this special season three finale, Martine is joined by Kathy Perez, Head of Global Patient Advocacy at argenx. They reflect on some of the most impactful and moving moments from guests this season. Kathy asks Martine about her favorite learnings and takeaways as host of the show. While life with autoimmune conditions like MG or CIDP includes a wide range of emotions, Kathy and Martine dig into perhaps the strongest of them all: hope. Whether managing frustrations or juggling the physical changes and pain, hope is what continues to shine through as a beacon for perseverance. Together, Kathy and Martine underscore the transformative power of sharing each untold story, building a strong community, and demonstrating how fostering hope becomes armor for adversity. See omnystudio.com/listener for privacy information.

    ٣٤ من الدقائق

  2. ٢٩‏/٠٣‏/١٤٤٦ هـ

    Pushing Past Grief: Staying Positive with MG

    In 2007, Tony’s MG journey began with severe double vision, quickly leading to several episodes of pneumonia. He was in and out of the hospital and rehab facilities for many years, only reaching his MG diagnosis in 2014. Through it all, he was supported by his wife and tireless caregiver, Catherine, documenting every step along the way. From the start, Tony remained determined to regain his strength and to raise awareness for MG. His curiosity and drive led him to become a voice for the MG community across Canada. Though his life changed drastically, Tony embraced the grieving process for the life he once knew and found ways to cherish his new reality. See omnystudio.com/listener for privacy information.

    ٢٢ من الدقائق

  3. ١٥‏/٠٣‏/١٤٤٦ هـ

    Embracing Gratitude: Remaining Positive in the Face of CIDP

    Craig’s CIDP journey began in college when growing symptoms and fatigue halted his running career and confined him to a cane, then a wheelchair. But from the very beginning, Craig remained positive and focused on finding answers. Having seen some videos about CIDP, he worked with his doctor to determine his official diagnosis. Craig’s curiosity and hunger for problem-solving inspired him to explore holistic approaches to supporting his overall health. Now Craig uses his experiences and creativity to pay it forward and connect with others through his own YouTube channel. Though his life took a considerable pivot, Craig navigates his health journey with a bit of humor and a lot of gratitude. See omnystudio.com/listener for privacy information.

    ٣٢ من الدقائق

  4. ٠١‏/٠٣‏/١٤٤٦ هـ

    Facing Frustration: The Hurdles of Life with CIDP

    Beyond the unpredictable symptoms, Dana’s CIDP journey included misdiagnosis after misdiagnosis and many lessons in insurance coverage. All of which made frustration a frequent feeling. There are many challenges–beyond the fatigue, muscle tingling, and weakness–associated with CIDP. Dana shares her story of living with CIDP, starting with muscle numbness on a camping trip, followed by years of appointments with multiple specialists and navigating insurance hurdles. Learning from her own CIDP journey, today, Dana uses her experiences to inspire, help, and connect with others in the CIDP and Guillain-Barré syndrome (GBS) community. See omnystudio.com/listener for privacy information.

    ٢٥ من الدقائق

  5. ٠٣‏/٠٢‏/١٤٤٦ هـ

    Building Confidence: Understanding Self-Worth with MG

    Tasha has always faced life’s challenges head-on. Diagnosed with MG at the young age of 6, she quickly learned the importance of self-confidence. At 29, an MG crisis pushed her to manage her health from a new perspective. From her hospital bed, she created a nonprofit aimed not just at sharing her story but also at empowering and inspiring others within the MG community. Despite numerous setbacks, Tasha tapped into a deep well of strength, showcasing the transformative power of believing in oneself.  See omnystudio.com/listener for privacy information.

    ٣٥ من الدقائق

  6. ٢٠‏/١٢‏/١٤٤٥ هـ

    Untold Stories will be right back!

    We’re taking a quick break in the season and will be back soon with new episodes! In the meantime, if you haven’t done so already, don’t forget to check out some of the episodes from seasons one and two of Untold Stories. See omnystudio.com/listener for privacy information.

    ٢١ من الثواني

  7. ٠٦‏/١٢‏/١٤٤٥ هـ

    Finding Resilience: Staying Strong with CIDP

    Julie is no stranger to adversity. Diagnosed with CIDP at the age of 28, in the midst of motherhood and a full-time job as a special education teacher, Julie quickly found herself balancing it all while managing the debilitating symptoms of her condition. As she started to find a sense of normalcy, life threw her another curveball: her husband was diagnosed with cancer and would now need Julie to care for him. Despite these challenges, Juile was unwilling to give up. She shifted gears, found strength within herself that she never believed possible, and turned her situation into an inspiring journey filled with creativity, passion, and hope for all. See omnystudio.com/listener for privacy information.

    ٣٧ من الدقائق

  8. ٢١‏/١١‏/١٤٤٥ هـ

    Out of Loneliness: Finding Connection with MG

    Morgan found herself grappling with many feelings of loneliness and self-doubt on top of the overwhelming physical symptoms of her MG. Diagnosed in her mid-twenties, it felt like everything Morgan had built in her life might be taken away by the changes that came with her condition. Just when it seemed all hope was lost, Morgan found the strength to reconnect with herself and others. By tapping into her creativity and love for storytelling, she created an outlet that changed her life and the lives of many others facing MG. Morgan shares her story and how the experience lifted her up at a time when she felt truly alone. See omnystudio.com/listener for privacy information.

    ٣٩ من الدقائق
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For people diagnosed with a rare, autoimmune condition like myasthenia gravis (MG) or chronic inflammatory demyelinating polyneuropathy (CIDP), life can change in the blink of an eye. But these conditions affect everyone differently, and each person has a story to tell. Welcome to “Untold Stories: Life with a Severe Autoimmune Condition,” a Ruby Studio from iHeart Media production in partnership with argenx. Host Martine Hackett has real, eye-opening conversations with people living with rare, autoimmune conditions ranging from MG to CIDP. Learn about the hardships of diagnosis and each person’s journey towards wellness. Understand the challenges they continue to overcome as they discover how to live with these conditions and persevere through the tough times. Plus, hear from the family members and friends who stand by them every day and play important roles in their care.

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    Untold Stories: Life with a Severe Autoimmune Condition
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