Untold Stories: Life with a Severe Autoimmune Condition

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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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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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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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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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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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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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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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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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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