Connecting to Care: The Importance of Self-Advocacy with MG

Connecting to Care: The Importance of Self-Advocacy with MG

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 with their blog, In Sickness and Nevermind, and redefined success for her own MG journey.

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Episoder(41)

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

Untold Stories is back for Season 6!

Untold Stories is back for Season 6!

Martine Hackett returns with a new season of Untold Stories: Life with a Severe Autoimmune Condition. The best stories unite us, empower us, and help us push forward—against all odds. This season, we’...

13 Mai 1min

Brandon & Dr. Thawani: The power of shared-decisions

Brandon & Dr. Thawani: The power of shared-decisions

After a sudden change in mobility, Brandon Cutrell found himself on an unexpected path toward a CIDP diagnosis. That journey led him to build a remarkable partnership with his neurologist, Dr. Sujata ...

24 Des 202529min

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