Claim OwnershipUntold Stories: Life with a Severe Autoimmune Condition
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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.
32 Episodes
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As Britt prepared to give birth to her first child, an unexpected CIDP diagnosis changed everything. Just like that, motherhood looked incredibly different than she had imagined. Hear how Britt learned to walk with her son, fought to regain her strength, and eventually became grateful for all she went through.See omnystudio.com/listener for privacy information.
After closing her beloved yoga studio and losing her mother, Tanya Chiu was faced with a new challenge–she was diagnosed with myasthenia gravis. Her story is one of resilience, reclaiming purpose and rediscovering joy when life takes an unexpected turn.See omnystudio.com/listener for privacy information.
Trent was a new father when his life changed overnight, losing the ability to walk, speak or even lift a phone. He spent years in a wheelchair before finding his way back through sport and self-advocacy. Join Martine as Trent shares how he went from paralysis to paratriathlete.See omnystudio.com/listener for privacy information.
See omnystudio.com/listener for privacy information.
Lea was just 12 when her symptoms began, but six years passed before doctors finally gave her an MG diagnosis. In that time, she lost the ability to walk, speak, and swallow, yet never lost her determination to live fully. Join Martine as Lea shares her journey from Germany and how the fight to find a diagnosis crosses every border.See omnystudio.com/listener for privacy information.
Corbin is an engineer who faced a dual diagnosis with a 1.8% survival rate as a problem to solve. He didn’t see despair with that number - he saw a possibility. The possibility that, if he was able to keep living, doctors would find a way to increase that number significantly. He did, and today he’s doing well. Crucial to his determination was the CIDP community, which welcomed him with open arms. Corbin shares how he found his community and his jump from advocating for himself to advocating for a movement. See omnystudio.com/listener for privacy information.
Leah is a Mexican American who experienced symptoms from slurring her words and choking on food with multiple doctors struggling to see the full picture. In this episode, hear how an MG crisis helped Leah uncover a diagnosis and how she turned that experience into action, building a space for others who may not feel seen.See omnystudio.com/listener for privacy information.
Jamilah went from daily dance rehearsals to struggling to move through her own home, while her symptoms were continuously dismissed. In this episode, hear how finally getting a diagnosis changed everything: from relearning her body and rebuilding relationships to finding connection again in a whole new way of life.See omnystudio.com/listener for privacy information.
Justin is a husband, entrepreneur, and full-time caregiver to his wife, Shawna–– our very first podcast guest. In this episode, Justin talks about what it’s really like to care for someone you love. From juggling nonstop doctor visits to being the go-to advocate in every medical setting, Justin shares how he stays grounded, what keeps him going, and why self-care is survival. See omnystudio.com/listener for privacy information.
Jasmine is a career coach, wife, and mother who is newly diagnosed with CIDP but no stranger to fighting for her health. After years of navigating lupus and rheumatoid arthritis, Jasmine learned how to push back, speak up, and keep going. Join Martine for the season 4 premiere as Jasmine shares what it’s like to face a new diagnosis mid-journey, and why she refuses to stay silent.See omnystudio.com/listener for privacy information.
Martine Hackett returns with a new season of Untold Stories: Life with a Severe Autoimmune Condition. The best stories unite us, empower us, and help us push forward against all odds. This season, we hear from people living with myasthenia gravis (MG) and chronic inflammatory demyelinating polyneuropathy (CIDP) as they reclaim their identities, fight for care, and find strength in both community and themselves. Join us starting July 23rd.See omnystudio.com/listener for privacy information.
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.
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.
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.
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.
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.
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.
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.
Martine Hackett returns with season three of “Untold Stories”! This time, she delves deeper than ever into the heart of what it’s like to live with conditions like myasthenia gravis (MG) and chronic inflammatory demyelinating polyneuropathy (CIDP). From the frustration of misdiagnosis to the hope of managing symptoms, each emotion along the journey is important. But ultimately, these shared feelings bring the community together and are an essential part of strengthening our connection to others living with a severe autoimmune condition. Join us for new episodes starting May 29th.See omnystudio.com/listener for privacy information.
Raymond, a retired designer, lived with HIV for 40 years before the onset of his myasthenia gravis (MG) symptoms. As a longtime caregiver for his mother, he was no stranger to the hospital visits and advocacy that is part of seeking quality care. However, after his mother’s passing and the start of COVID-19, he chalked the fatigue and muscle spasms up to stress. It took various specialists to reach proper testing and his official MG diagnosis. Raymond had shifted from caregiver to being his own fierce advocate and was able to gain a new perspective on his relationships and prioritizing self-care. No stranger to managing the effects and stigma of a chronic condition, Raymond maintains even stronger personal connections and boundaries.See omnystudio.com/listener for privacy information.
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