Finding Your Pace: Building New Boundaries with MG

Finding Your Pace: Building New Boundaries with MG

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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Episoder(43)

Allison: A Lifetime of Progress with MG

Allison: A Lifetime of Progress with MG

Allison Foss was diagnosed with MG at just five years old. Join Martine Hackett as Allison looks back on a lifetime with MG and the remarkable changes she’s witnessed along the way, from a growing und...

7 Okt 25min

Untold Stories is back for Season 7!

Untold Stories is back for Season 7!

Martine Hackett returns with a new season of Untold Stories: Life with a Severe Autoimmune Condition. This season, we’re exploring what comes after diagnosis through stories of hope, progress, and con...

23 Sep 1min

Carly and Catherine: Hope, Uncertainty, and Clinical Trials.

Carly and Catherine: Hope, Uncertainty, and Clinical Trials.

Catherine, who is living with IgA nephropathy (IgAN), and Carly, a speech-language pathologist whose CIDP once left her paralyzed and dependent on a ventilator, share their experiences participating i...

6 Aug 27min

Holly: Moving Forward with Myositis.

Holly: Moving Forward with Myositis.

Holly shares her story of being diagnosed with myositis at just 19 years old and transforming the challenges of a rare autoimmune disease into a lifelong commitment to advocacy and community. Join Mar...

15 Jul 28min

Amanda: From CIDP Diagnosis to Discovering Her Purpose

Amanda: From CIDP Diagnosis to Discovering Her Purpose

Amanda shares how a CIDP diagnosis changed nearly every aspect of her life, ultimately leading her to become a powerful advocate for the rare disease community. Join Martine Hackett as she explores th...

1 Jul 27min

Alicia: The Long Road to Answers with Seronegative MG

Alicia: The Long Road to Answers with Seronegative MG

Alicia, an artist and musician living with seronegative MG, shares her story of persistence, self-advocacy, and finding the right support system. Join Martine Hackett as she explores how connection an...

17 Jun 24min

Mel & Lindsay: Different Diagnoses. Shared Experiences.

Mel & Lindsay: Different Diagnoses. Shared Experiences.

Mel is a dancer living with CIDP. Lindsay is a writer living with dermatomyositis. In this episode, Martine Hackett explores how similar the emotional journey can feel as two people living with differ...

2 Jun 27min

J’Sean: The Impact of MG with Ocular Symptoms

J’Sean: The Impact of MG with Ocular Symptoms

In the season premiere, J’Sean shares what it’s like to live with MG with ocular symptoms. Join Martine Hackett as she explores the real impact of ocular symptoms–– and how understanding that impact c...

20 Mai 29min

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