Advertise on podcast: Untold Stories: Life with a Severe Autoimmune Condition
Rating
4.1from
This podcast has
43 episodes
Language
EnglishPublisher
iHeartPodcastsExplicit
No
Date created
2023/06/14
Latest episode
2026/10/07
Average duration
23 min.
Release period
25 days
Description
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.
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Podcast episodes
Check latest episodes from Untold Stories: Life with a Severe Autoimmune Condition podcast
Allison: A Lifetime of Progress with MG
2026/10/07
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.
Untold Stories is back for Season 7!
2026/09/23
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.
Carly and Catherine: Hope, Uncertainty, and Clinical Trials.
2026/08/06
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: Moving Forward with Myositis.
2026/07/15
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: From CIDP Diagnosis to Discovering Her Purpose
2026/07/01
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: The Long Road to Answers with Seronegative MG
2026/06/17
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 & Lindsay: Different Diagnoses. Shared Experiences.
2026/06/02
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.
J’Sean: The Impact of MG with Ocular Symptoms
2026/05/20
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.
Untold Stories is back for Season 6!
2026/05/13
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.
Brandon & Dr. Thawani: The power of shared-decisions
2025/12/24
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.
See omnystudio.com/listener for privacy information.
Aging With an Autoimmune Disease
2025/12/10
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.
See omnystudio.com/listener for privacy information.
Adapting through Life’s Milestones
2025/11/26
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.
Rediscovering Purpose
2025/11/12
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.
Growing Through Setbacks
2025/10/29
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.
Untold Stories is back for Season Five
2025/10/22
See omnystudio.com/listener for privacy information.
Podcast reviews
Read Untold Stories: Life with a Severe Autoimmune Condition podcast reviews
sympleko 2025/09/03
Slop
This is obviously astroturf content backed by whatever company makes the drug that treats it
Elizanor23 2025/09/02
Repetitive Ads
I’m sure this is a worthwhile podcast for the narrow audience to which it directly applies. I am not this audience (even as a scientist interested in ...
MESTRK 2024/04/09
So important to the community
This podcast is so important for this community. Such a great space to share the stories of the people living with these conditions. Despite the chall...
coffeel0vrr 2024/02/23
It’s the little things
I was shocked to find this show and see myself in every story. 12 years into life with MG and things have gotten easier to manage. At the end of the d...
Breesa2 2023/07/24
Untold Story
I ran upon this podcast while in my car would love to tell the story of my Aunt who was a star athlete and got diagnosed with this disease in 1982 she...
ApplesAHG23 2023/07/11
I’m just two eps in and already so thankful.
Wow. This podcast is full of resources that have helped me better understand my MG diagnosis, and connected me with other MG communities. I am based i...
yhkocvmigfvnl 2023/07/10
Really
The audience for this is tiny. There is absolutely no reason I should be hearing ads for this, multiple times an episode, every single podcast I liste...
Paul Camps Out 2023/06/21
So important for the MG community
This is the first time there has been an entire show dedicated to those living with MG. Thank you for making this!!!!
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