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.
Episodes
Amanda shares how a CIDP diagnosis changed nearly every aspect of her life, ultimately leading her to become a powerful advocate for the rare disease community. Join Martine Hackett as she explores the emotional impact of diagnosis, the power of connection, and how Amanda turned her experience into advocacy to help others feel seen, supported, and less alone.
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Alicia, an artist and musician living with seronegative MG, shares her story of persistence, self-advocacy, and finding the right support system. Join Martine Hackett as she explores how connection and shared experiences can help people navigate even the most uncertain journeys.
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Mel is a dancer living with CIDP. Lindsay is a writer living with dermatomyositis. In this episode, Martine Hackett explores how similar the emotional journey can feel as two people living with different rare diseases navigate uncertainty, self-advocacy, and the challenge of rebuilding their lives.
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In the season premiere, J’Sean shares what it’s like to live with MG with ocular symptoms. Join Martine Hackett as she explores the real impact of ocular symptoms–– and how understanding that impact can help you be heard and find the right support.
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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’re growing our community, and welcoming voices from myositis and IgAN to the fold. We are stronger, together.
See omnystudio.com/listener for privacy information.
After a sudden change in mobility, Brandon Cutrell found himself on an unexpected path toward a CIDP diagnosis. That journey led him to build a remarkable partnership with his neurologist, Dr. Sujata Thawani. In this special episode, Brandon and Dr. Thawani share how trust, advocacy, and shared decision-making make the doctor-patient relationship central to navigating a chronic illness.
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When Sandy was diagnosed with MG at age 60, she was forced to retire early, leaving behind the job she loved and facing her golden years with unanticipated hurdles. Now 15 years later, Sandy spends her days organizing her local support group, enjoying lunches with her friends, and attending her grandson's sporting events. MG may have thrown a wrench in her retirement plans, but it can’t slow her down for long.
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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.
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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.
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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.
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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.
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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 f...
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.
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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 inform...
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 Jul...
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:...
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...
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