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Artwork for Untold Stories: Life with a Severe Autoimmune Condition

Untold Stories: Life with a Severe Autoimmune Condition

iHeartPodcasts
Chronic Inflammatory Demyelinating Polyneuropathy
Myasthenia Gravis
Community Support
Self-Advocacy
Patient Advocacy
Chronic Illness
Autoimmune Conditions
CIDP
Mental Health
Life With CIDP
Autoimmune Disease
Hope
Resilience
Caregiving
Cultural Differences
Insurance Frustration
Healthcare Disparities
Support Groups
Autoimmune Diseases
Gratitude

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 w... more

PublishesTwice monthlyEpisodes28Founded2 years ago
Number of ListenersCategories
Life SciencesHealth & FitnessMedicineScience

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Artwork for Untold Stories: Life with a Severe Autoimmune Condition

Latest Episodes

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 ... more

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... more

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 e... more

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 rel... more

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Recent Guests

Lea Middeldorf
A 21-year-old from Germany living with myasthenia gravis, sharing her personal journey and challenges faced along the way.
Episode: Community Support Across Borders
Corbin Whittington
Global strategist engineer and passionate advocate for those with chronic inflammatory demyelinating polyneuropathy (CIDP).
GBS CIDP Foundation International
Episode: Power in Community
Leah Gaetan-Diaz
Mexican-American woman and native Spanish speaker living with myasthenia gravis
Episode: Understanding Cultural Differences

Host

Martine Hackett
Host of Untold Stories: Life with a Severe Autoimmune Condition, conducting conversations that highlight resilience and experiences of individuals living with autoimmune conditions.

Reviews

4.1 out of 5 stars from 38 ratings
  • Slop

    This is obviously astroturf content backed by whatever company makes the drug that treats it

    Apple Podcasts
    1
    sympleko
    United Statesa month ago
  • 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 the health journey of others). Please consider targeting your ads more directly - I am hearing them 4x in an hour podcast, for several weeks now. It’s a skip every time and now a negative review in hopes the message arrives.

    Apple Podcasts
    1
    Elizanor23
    United Statesa month ago
  • Great show

    Congratulations for having an amazing show, but I have one HUGE ask!!!

    Please take out Natalia Grace from your promotional clips that pop up on other podcasts. Please please! I get a weird feeling when hearing her voice. And I know I am not the only one!!

    Thank you!

    Apple Podcasts
    5
    Danny Baez!
    Mexicoa year ago
  • 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 challenges of living with MG, this fills me with so much hope.

    Apple Podcasts
    5
    MESTRK
    United States2 years ago
  • 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 day it’s realizing your not alone that fills in the cracks on the hard days. Thank you for making this show!

    Apple Podcasts
    5
    C Buhay
    United States2 years ago

Listeners Say

Key themes from listener reviews, highlighting what works and what could be improved about the show.

The valuable insights into navigating health challenges have resonated strongly with the audience, often sharing that they felt less alone in their struggles.
Listeners appreciate the importance of sharing personal stories within the autoimmune community, as it fosters a sense of connection and support.

Chart Rankings

How this podcast ranks in the Apple Podcasts, Spotify and YouTube charts.

Talking Points

Recent interactions between the hosts and their guests.

Power in Community
Q: What role did your key cardiologist play in your journey?
Corbin explains that his cardiologist took a special interest in his case and was willing to explore new tests and solutions.
Power in Community
Q: How did you hold on to hope when nearly every expert said there was none?
Corbin reflects on his previous experiences, faith, and confidence in advancing technology that could improve his odds.
Navigating connection after diagnosis
Q: As a global immunology company committed to improving the lives of people suffering from severe autoimmune conditions, what does Argenics aim to provide?
Argenics aims to support the CIDP community with resources, information, and stories to help those affected by the condition.
Navigating connection after diagnosis
Q: What made the relationship with your neurologist different from earlier medical experiences?
Jamilah's neurologist showed real attentiveness and provided encouragement, making her feel heard and supported in her journey.
Navigating connection after diagnosis
Q: Jamilah, when you first started experiencing symptoms, you were still dancing, you were working full time, and running your business. Looking back, what was it like trying to make sense of that shift in your body?
Jamilah felt her life was over as her body deteriorated and was very sad, questioning her independence and the support of her friends.

Audience Metrics

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Frequently Asked Questions About This Podcast

What is This Podcast about and what kind of topics does it cover?

This podcast explores the diverse experiences of individuals living with severe autoimmune conditions like myasthenia gravis and chronic inflammatory demyelinating polyneuropathy. The show brings personal stories to the forefront, highlighting the struggles and triumphs of those affected by these rare illnesses. Conversations emphasize themes of resilience, self-advocacy, community support, and the importance of mental health in managing chronic diseases. Unique in its focus, the podcast not only shares patient narratives but also features insights from caregivers, underscoring the collective journey towards wellness and understanding within the autoimmune community.

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These podcasts share a similar audience with this podcast:

1. This Is Actually Happening
2. Betrayal: Weekly
3. Family Secrets
4. What Came Next
5. American History Hotline

How many episodes of this podcast are there?

this podcast launched 2 years ago and published 28 episodes to date. You can find more information about this podcast including rankings, audience demographics and engagement in our podcast database.

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What guests have appeared on this podcast?

Recent guests on this podcast include:

1. Lea Middeldorf
2. Corbin Whittington
3. Leah Gaetan-Diaz

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