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PODCAST

Untold Stories: Life with a Severe Autoimmune Condition

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,

health & fitness medicine

All Episodes

2:03

Untold Stories is back for Season Three!

Untold Stories: Life with a Severe Autoimmune Condition ·

2024/05/22

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

en-US

29:27

Finding Your Pace: Building New Boundaries with MG

Untold Stories: Life with a Severe Autoimmune Condition ·

2024/02/14

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

en-US

34:14

Behind the Seams: Unraveling and Restitching Life...

Untold Stories: Life with a Severe Autoimmune Condition ·

2024/01/31

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

en-US

33:16

Understanding and Acceptance: Being an Active Partner...

Untold Stories: Life with a Severe Autoimmune Condition ·

2024/01/17

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

en-US

32:47

Prioritizing Care: Confronting Postpartum with MG

Untold Stories: Life with a Severe Autoimmune Condition ·

2023/12/27

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

en-US

1:33

Untold Stories is Back!

Untold Stories: Life with a Severe Autoimmune Condition ·

2023/12/13

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 13thSee omnystudio.com/listener for privacy information.

en-US

30:42

Accessing Ambition: Professional Success While Living...

Untold Stories: Life with a Severe Autoimmune Condition ·

2023/08/16

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

en-US

27:25

Body & Spirit: Finding Respite Despite MG

Untold Stories: Life with a Severe Autoimmune Condition ·

2023/08/02

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

en-US

29:43

Leading with Love: Thriving in Marriage While Living...

Untold Stories: Life with a Severe Autoimmune Condition ·

2023/07/19

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

en-US

26:36

Bonus Episode: The Realities of Life with CIDP

Untold Stories: Life with a Severe Autoimmune Condition ·

2023/07/12

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

en-US

31:54

Building Community: Navigating Young Adulthood with MG

Untold Stories: Life with a Severe Autoimmune Condition ·

2023/07/05

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

en-US

27:31

Connecting to Care: The Importance of Self-Advocacy...

Untold Stories: Life with a Severe Autoimmune Condition ·

2023/06/21

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,

en-US

2:13

Welcome to Untold Stories: Life with Myasthenia Gravis

Untold Stories: Life with a Severe Autoimmune Condition ·

2023/06/14

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

en-US

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