Untold Stories: Life with a Severe Autoimmune Condition

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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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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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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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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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), and even hear from people living with autoimmune conditions such as pemphigus. Join us starting Wednesday, December 27th.

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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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