Untold Stories: Life with a Severe Autoimmune Condition

Mel & Lindsay: Different Diagnoses. Shared Experiences.

Tue, 02 Jun 2026 05:30:00 +0000

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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J’Sean: The Impact of MG with Ocular Symptoms

Wed, 20 May 2026 05:30:00 +0000

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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Untold Stories is back for Season 6!

Wed, 13 May 2026 05:30:00 +0000

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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Brandon & Dr. Thawani: The power of shared-decisions

Wed, 24 Dec 2025 11:00:00 +0000

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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Aging With an Autoimmune Disease

Wed, 10 Dec 2025 11:00:00 +0000

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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Adapting through Life’s Milestones

Wed, 26 Nov 2025 11:00:00 +0000

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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Rediscovering Purpose

Wed, 12 Nov 2025 11:00:00 +0000

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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Growing Through Setbacks

Wed, 29 Oct 2025 10:00:00 +0000

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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Untold Stories is back for Season Five

Wed, 22 Oct 2025 10:00:00 +0000

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Community Support Across Borders

Wed, 01 Oct 2025 10:00:00 +0000

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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Power in Community

Wed, 17 Sep 2025 10:00:00 +0000

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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Understanding Cultural Differences

Wed, 03 Sep 2025 10:00:00 +0000

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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Navigating connection after diagnosis

Wed, 20 Aug 2025 10:00:00 +0000

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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Balancing caregiving with self-care

Wed, 06 Aug 2025 10:00:00 +0000

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.

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Finding Your Voice In the Healthcare System

Wed, 23 Jul 2025 10:00:00 +0000

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.

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Untold Stories is back for Season Four!

Wed, 16 Jul 2025 10:00:00 +0000

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.

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Harnessing Hope: Life Beyond Autoimmune Conditions

Wed, 23 Oct 2024 11:00:00 +0000

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.

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Pushing Past Grief: Staying Positive with MG

Wed, 02 Oct 2024 11:00:00 +0000

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.

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Embracing Gratitude: Remaining Positive in the Face of CIDP

Wed, 18 Sep 2024 11:00:00 +0000

Craig’s CIDP journey began in college when growing symptoms and fatigue halted his running career and confined him to a cane, then a wheelchair. But from the very beginning, Craig remained positive and focused on finding answers. Having seen some videos about CIDP, he worked with his doctor to determine his official diagnosis. Craig’s curiosity and hunger for problem-solving inspired him to explore holistic approaches to supporting his overall health. Now Craig uses his experiences and creativity to pay it forward and connect with others through his own YouTube channel. Though his life took a considerable pivot, Craig navigates his health journey with a bit of humor and a lot of gratitude.

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Facing Frustration: The Hurdles of Life with CIDP

Wed, 04 Sep 2024 11:00:00 +0000

Beyond the unpredictable symptoms, Dana’s CIDP journey included misdiagnosis after misdiagnosis and many lessons in insurance coverage. All of which made frustration a frequent feeling. There are many challenges–beyond the fatigue, muscle tingling, and weakness–associated with CIDP. Dana shares her story of living with CIDP, starting with muscle numbness on a camping trip, followed by years of appointments with multiple specialists and navigating insurance hurdles. Learning from her own CIDP journey, today, Dana uses her experiences to inspire, help, and connect with others in the CIDP and Guillain-Barré syndrome (GBS) community.

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Building Confidence: Understanding Self-Worth with MG

Wed, 07 Aug 2024 11:00:00 +0000

Tasha has always faced life’s challenges head-on. Diagnosed with MG at the young age of 6, she quickly learned the importance of self-confidence. At 29, an MG crisis pushed her to manage her health from a new perspective. From her hospital bed, she created a nonprofit aimed not just at sharing her story but also at empowering and inspiring others within the MG community. Despite numerous setbacks, Tasha tapped into a deep well of strength, showcasing the transformative power of believing in oneself.

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Untold Stories will be right back!

Wed, 26 Jun 2024 17:21:55 +0000

We’re taking a quick break in the season and will be back soon with new episodes! In the meantime, if you haven’t done so already, don’t forget to check out some of the episodes from seasons one and two of Untold Stories.

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Finding Resilience: Staying Strong with CIDP

Wed, 12 Jun 2024 11:00:00 +0000

Julie is no stranger to adversity. Diagnosed with CIDP at the age of 28, in the midst of motherhood and a full-time job as a special education teacher, Julie quickly found herself balancing it all while managing the debilitating symptoms of her condition. As she started to find a sense of normalcy, life threw her another curveball: her husband was diagnosed with cancer and would now need Julie to care for him. Despite these challenges, Juile was unwilling to give up. She shifted gears, found strength within herself that she never believed possible, and turned her situation into an inspiring journey filled with creativity, passion, and hope for all.

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Out of Loneliness: Finding Connection with MG

Wed, 29 May 2024 10:00:00 +0000

Morgan found herself grappling with many feelings of loneliness and self-doubt on top of the overwhelming physical symptoms of her MG. Diagnosed in her mid-twenties, it felt like everything Morgan had built in her life might be taken away by the changes that came with her condition. Just when it seemed all hope was lost, Morgan found the strength to reconnect with herself and others. By tapping into her creativity and love for storytelling, she created an outlet that changed her life and the lives of many others facing MG. Morgan shares her story and how the experience lifted her up at a time when she felt truly alone.

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Untold Stories is back for Season Three!

Wed, 22 May 2024 10:00:00 +0000

Martine Hackett returns with season three of “Untold Stories”! This time, she delves deeper than ever into the heart of what it’s like to live with conditions like myasthenia gravis (MG) and chronic inflammatory demyelinating polyneuropathy (CIDP). From the frustration of misdiagnosis to the hope of managing symptoms, each emotion along the journey is important. But ultimately, these shared feelings bring the community together and are an essential part of strengthening our connection to others living with a severe autoimmune condition. Join us for new episodes starting May 29th.

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Finding Your Pace: Building New Boundaries with MG

Wed, 14 Feb 2024 11:00:00 +0000

Raymond, a retired designer, lived with HIV for 40 years before the onset of his myasthenia gravis (MG) symptoms. As a longtime caregiver for his mother, he was no stranger to the hospital visits and advocacy that is part of seeking quality care. However, after his mother’s passing and the start of COVID-19, he chalked the fatigue and muscle spasms up to stress. It took various specialists to reach proper testing and his official MG diagnosis. Raymond had shifted from caregiver to being his own fierce advocate and was able to gain a new perspective on his relationships and prioritizing self-care. No stranger to managing the effects and stigma of a chronic condition, Raymond maintains even stronger personal connections and boundaries.

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Behind the Seams: Unraveling and Restitching Life with MG

Wed, 31 Jan 2024 15:49:32 +0000

Jacqueline, also known as Jacq, lived in New York City with big dreams of succeeding in the fashion industry. However, her life took a significant turn after she was diagnosed with myasthenia gravis (MG), which had a profound impact on her career and marriage. Jacq faced debilitating symptoms, including many injuries, oftentimes on her own. Her family and her employer could not fully understand the strain and financial responsibility that MG would add to her life. Despite the challenges, Jacqueline found joy in rebuilding her life on her terms and grounded herself in the support of her chosen family. She has been able to cultivate grace and stability through the adjustments in her life and shares her empowering message.

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Understanding and Acceptance: Being an Active Partner in Your CIDP Treatment

Wed, 17 Jan 2024 18:46:12 +0000

As a successful and resilient attorney, Rorey was blindsided by the onset of debilitating muscle weakness and fatigue. After months of countless tests, he found a sense of relief when doctors diagnosed him with chronic inflammatory demyelinating polyneuropathy (CIDP). He navigated the complications of a condition that is not always visible or understood by others. Looking to be an active partner in his treatment, Rorey used his analytical skills to do research and find ways to manage his condition. With family support and an amazing healthcare team, he cultivated grace and acceptance for his condition. Learning to not only manage his physical limitations, Rorey has also found a new perspective on his overall health and overcoming challenges through his CIDP journey.

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Prioritizing Care: Confronting Postpartum with MG

Wed, 27 Dec 2023 15:15:50 +0000

Nicole is an epidemiologist whose life took an unexpected turn with an MG diagnosis between pregnancies. She had to prioritize how she cared for herself through postpartum depression, while also adapting to parenthood with MG. Nicole discusses how her background in public health provided a foundational understanding of the condition. But ultimately by leaning on her family and caring specialists, she learned to reapproach her life with MG. Through her thoughtful insights, Nicole shares a deeper appreciation for resilience and adaptability through unforeseen health challenges.

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Untold Stories is Back!

Wed, 13 Dec 2023 11:00:00 +0000

Martine Hackett returns with a new season of “Untold Stories: Life with a Severe Autoimmune Condition.” Hear from people forging new paths after diagnosis, and learn how they build community and evolve their outlook on life. We’ll learn more about life with myasthenia gravis (MG) and chronic inflammatory demyelinating polyneuropathy (CIDP). Join us starting Wednesday, December 13th

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Accessing Ambition: Professional Success While Living with MG

Wed, 16 Aug 2023 10:00:00 +0000

While myasthenia gravis, or MG, can make navigating everyday tasks more difficult, it does not have to stop people living with MG from pursuing rich personal and professional lives. In this episode, Felicia and Sean talk about how they both remained driven as leaders in their industries while managing the debilitating condition. Often challenged by her MG symptoms, including vocal fatigue, Felicia learned how to find her voice and use it in new and powerful ways. She was able to build her consulting firm specifically helping entrepreneurs with disabilities start and grow their own businesses. Sean was an award-winning chef when his MG symptoms challenged his highly demanding lifestyle. Being forced to take time off showed him the value of taking breaks and ultimately, Sean learned new ways to be successful and mindful across all aspects of his life. They both share how they gained important lessons and powerful perspectives while learning to live with their MG.

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Body & Spirit: Finding Respite Despite MG

Wed, 02 Aug 2023 10:00:00 +0000

Managing life with a rare disease like myasthenia gravis, or MG, can challenge the way you see yourself. Being mindful of emotional wellness can be as important as adapting to physical changes. Today’s guest, Eri, had to re-envision himself when his MG diagnosis challenged the role he played as a provider for his family and pillar in the community. Before the onset of his symptoms, he had never considered what challenges he would face in maintaining such a demanding life. By making lifestyle changes and cultivating a support system that strengthened his emotional well-being, Eri learned to prioritize his health alongside his responsibilities.

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Leading with Love: Thriving in Marriage While Living with MG

Wed, 19 Jul 2023 10:00:00 +0000

Myasthenia gravis, or MG, takes a toll on the lives of those living with the condition, but it also affects their loved ones. As Jessica and her husband Jonathan were preparing to welcome their second child into the world, they were not expecting to receive Jessica’s MG diagnosis. With this new element added to their lives, they have had to learn how to navigate their evolving family roles, nurture their marriage, and advocate for one another and themselves. In this episode, Jessica and Jonathan share how they have established a new balance in their life together.

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Bonus Episode: The Realities of Life with CIDP

Wed, 12 Jul 2023 10:50:00 +0000

In this special bonus episode, we’ll spotlight one of the many rare conditions that deserves more attention and resources. Chronic inflammatory demyelinating polyneuropathy, more commonly known as CIDP, is a rare neurological condition that causes progressive weakness, impaired mobility, and reduced sensation in the arms and legs. Guests, Scott and Crystal, discuss how each of their lives were drastically impacted by CIDP. When Scott, a choreographer, was diagnosed, he had to learn to channel his creativity into new mediums. While Crystal, a former pharmaceutical executive who was well-versed in rare conditions, found herself diagnosed with one. Despite their different backgrounds, they’ve both found that compassion, community, and continually engaging in proper care has taught them how to cope with the adjustments they have had to make in their lives.

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Building Community: Navigating Young Adulthood with MG

Wed, 05 Jul 2023 04:00:00 +0000

Myasthenia gravis, or MG, affects people of all ages and races and is most commonly diagnosed later in life. However, for Anaya, her MG symptoms began when she was just 12 years old. Anaya went from being an active young athlete to struggling with immobility and school attendance. As a young black girl, Anaya’s age and race demographics complicated her MG diagnosis journey. However, by learning to advocate for herself and acknowledging her physical limitations, Anaya has been able to reframe her life with MG. She is now an ambitious college graduate and champion for other young people learning to live with this rare condition.

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Connecting to Care: The Importance of Self-Advocacy with MG

Wed, 21 Jun 2023 04:00:00 +0000

Navigating life with myasthenia gravis, or MG, often begins with a long road to diagnosis. For disabled veteran Shawna, the search for answers to her debilitating symptoms took several years. With the highs and lows of assistance from Veterans Affairs, she learned to navigate the healthcare system and make her voice heard, all while maintaining a positive outlook on her life with MG. Together with her caregiver and husband, Justin, Shawna has helped inspire the greater MG community with their blog, In Sickness and Nevermind, and redefined success for her own MG journey.

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Welcome to Untold Stories: Life with Myasthenia Gravis

Wed, 14 Jun 2023 04:02:00 +0000

With a rare neuromuscular condition like myasthenia gravis, or MG, everyone’s experience with the disease is unique and often filled with struggles and sacrifices. That’s why argenx has partnered with iHeartRadio to bring you “Untold Stories: Life with Myasthenia Gravis.” In each episode, host Martine Hackett will explore the lessons learned and obstacles overcome by real people living with MG and share their empowering perspectives. Listen every other week to find strength and inspiration in these stories from members of the MG community.

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