Advertise on podcast: Untold Stories: Life with a Severe Autoimmune Condition
Rating
3.9from
This podcast has
34 episodes
Language
EnglishPublisher
iHeartPodcastsExplicit
No
Date created
2023/06/14
Latest episode
2025/12/24
Average duration
26 min.
Release period
32 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
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
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Community Support Across Borders
2025/10/01
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.
See omnystudio.com/listener for privacy information.
Power in Community
2025/09/17
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.
See omnystudio.com/listener for privacy information.
Understanding Cultural Differences
2025/09/03
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.
Navigating connection after diagnosis
2025/08/20
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.
Balancing caregiving with self-care
2025/08/06
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.
See omnystudio.com/listener for privacy information.
Finding Your Voice In the Healthcare System
2025/07/23
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 information.
Untold Stories is back for Season Four!
2025/07/16
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 July 23rd.
See omnystudio.com/listener for privacy information.
Harnessing Hope: Life Beyond Autoimmune Conditions
2024/10/23
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: hope. Whether managing frustrations or juggling the physical changes and pain, hope is what continues to shine through as a beacon for perseverance. Together, Kathy and Martine underscore the transformative power of sharing each untold story, building a strong community, and demonstrating how fostering hope becomes armor for adversity.
See omnystudio.com/listener for privacy information.
Pushing Past Grief: Staying Positive with MG
2024/10/02
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 MG. His curiosity and drive led him to become a voice for the MG community across Canada. Though his life changed drastically, Tony embraced the grieving process for the life he once knew and found ways to cherish his new reality.
See omnystudio.com/listener for privacy information.
Podcast reviews
Read Untold Stories: Life with a Severe Autoimmune Condition podcast reviews
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...
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...
C Buhay 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...
BobbySams109 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...
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!!!!
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...
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