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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.” 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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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.
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.
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.
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.
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.
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.
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. 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’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.
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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.” 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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