Untold Stories: Life with a Severe Autoimmune Condition

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.

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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.

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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.

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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.

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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.

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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.

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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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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 found his community and his jump from advocating for himself to advocating for a movement.

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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.

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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.

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