Do you tune in to podcasts? What are some of your favorites? Did you know International Podcast Day is coming on September 30th? We recently connected with our friends at Untold Stories to learn more.
You are invited to listen to Untold Stories: Life with Myasthenia Gravis, a special podcast centered on the experiences of real people living with MG. In each episode, host Martine Hackett will speak to real people with MG to uncover the trials, tribulations, and triumphs they have experienced along their journey with this rare condition.
Q. What is Untold Stories: Life With Myasthenia Gravis?
A. Untold Stories: Life with Myasthenia Gravis is an exciting new podcast about people living with myasthenia gravis (MG), a challenge many never saw coming. From symptom onset to obtaining an accurate diagnosis and finding proper care, every person has a unique story to tell.
Q. How did Untold Stories come to be?
A. argenx partnered with the MGA and other MG patient advocacy organization leaders to develop a podcast dedicated to telling unique stories within the MG community with a goal of reaching new audiences and bringing awareness to myasthenia gravis.
Q. What can a listener expect from Untold Stories?
A. Each episode will uncover the reality of life with myasthenia gravis. From early signs and symptoms to obtaining an accurate diagnosis and finding care, every person with MG has a story to tell. And by featuring these real-life experiences, this podcast hopes to inspire the MG community, educate others about this rare condition, and let those living with it know that they are not alone.
Connecting to Care: The Importance of Self-Advocacy 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.
Building Community: Navigating Young Adulthood with MG Anaya’s MG symptoms began when she was just 12 years old. She went from being an active young athlete to struggling with immobility and school attendance. As a young black girl, Anaya’s age and race 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.
Leading with Love: Thriving in Marriage While Living with MG 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, 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.
Body and Spirit: Finding Respite Despite MG Managing life with MG can challenge the way you see yourself. 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.
Accessing Ambition: Professional Success While Living with MG 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. 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.
Q. Where can Untold Stories be found?
A. Listen to “Untold Stories: Life with Myasthenia Gravis” on the iHeart Radio App, Apple Podcasts, or wherever you get your podcasts.
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