Untold Stories: Life with a Severe Autoimmune Condition

Oct 23 2024 21 ep. 25 mins 74

Untold Stories: Life with a Severe Autoimmune Condition Podcast artwork

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, autoimmune conditions ranging from MG to CIDP. Learn about the hardships of diagnosis and each person’s journey towards wellness. Understand the challenges they continue to overcome as they discover how to live with these conditions and persevere through the tough times. Plus, hear from the family members and friends who stand by them every day and play important roles in their care.

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Harnessing Hope: Life Beyond Autoimmune Conditions

Oct 23 2024 34 mins

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

Pushing Past Grief: Staying Positive with MG

Oct 02 2024 22 mins

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

Embracing Gratitude: Remaining Positive in the Face of CIDP

Sep 18 2024 31 mins

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 in

Facing Frustration: The Hurdles of Life with CIDP

Sep 04 2024 25 mins

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, fo

Building Confidence: Understanding Self-Worth with MG

Aug 07 2024 35 mins

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

Untold Stories will be right back!

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.See omnystudio.com/listener for privacy information.

Finding Resilience: Staying Strong with CIDP

Jun 12 2024 37 mins

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 no

Out of Loneliness: Finding Connection with MG

May 29 2024 38 mins

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 other

Untold Stories is back for Season Three!

May 22 2024 2 mins

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 ultimatel

Finding Your Pace: Building New Boundaries with MG

Feb 14 2024 29 mins

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 s