Untold Stories: Life with a Severe Autoimmune Condition – Details, episodes & analysis

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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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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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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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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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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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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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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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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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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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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