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Untold Stories: Life with a Severe Autoimmune Condition: Daily Summaries Delivered
by iHeartPodcasts
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.” 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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- 1 weeks ago23 min
Waiyee: The Power of Connecting Your Myositis Care Team
Living with antisynthetase syndrome, a subtype of myositis, means Waiyee’s care doesn’t fit neatly into one doctor’s office. She’s learned how to ask questions, keep multiple specialists connected, and advocate for what she needs. Along the way, she found an unexpected outlet in art and an online community that transformed her own search for support into a way to help others feel seen.See omnystudio.com/listener for privacy information.
- 3 weeks ago25 min
Allison: A Lifetime of Progress with MG
Allison Foss was diagnosed with MG at just five years old. Join Martine Hackett as Allison looks back on a lifetime with MG and the remarkable changes she’s witnessed along the way, from a growing understanding of MuSK-positive MG to advances in treatment and care that continue to shape the road forward for people living with MG today.See omnystudio.com/listener for privacy information.
- Sep 23, 20261 min
Untold Stories is back for Season 7!
Martine Hackett returns with a new season of Untold Stories: Life with a Severe Autoimmune Condition. This season, we’re exploring what comes after diagnosis through stories of hope, progress, and connection. From advances in research and treatment to advocacy, community, and finding new possibilities, hear how people across the rare disease community are finding their own road forward.See omnystudio.com/listener for privacy information.
- Aug 6, 202627 min
Carly and Catherine: Hope, Uncertainty, and Clinical Trials.
Catherine, who is living with IgA nephropathy (IgAN), and Carly, a speech-language pathologist whose CIDP once left her paralyzed and dependent on a ventilator, share their experiences participating in clinical trials and the difficult decisions that came before saying yes. Join Martine Hackett as she explores how patients navigate uncertainty, weigh treatment decisions, and find hope in the possibility of helping both themselves and future generations of people living with rare diseases.See omnystudio.com/listener for privacy information.
- Jul 15, 202628 min
Holly: Moving Forward with Myositis.
Holly shares her story of being diagnosed with myositis at just 19 years old and transforming the challenges of a rare autoimmune disease into a lifelong commitment to advocacy and community. Join Martine Hackett as she explores how connection, resilience, and shared experiences can help people move forward after diagnosis.See omnystudio.com/listener for privacy information.
- Jul 1, 202627 min
Amanda: From CIDP Diagnosis to Discovering Her Purpose
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.See omnystudio.com/listener for privacy information.
- Jun 17, 202624 min
Alicia: The Long Road to Answers with Seronegative MG
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.See omnystudio.com/listener for privacy information.
- Jun 2, 202627 min
Mel & Lindsay: Different Diagnoses. Shared Experiences.
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.See omnystudio.com/listener for privacy information.
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About 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.” 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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