Bonus Episode: The Realities of Life with CIDP

Bonus Episode: The Realities of Life with CIDP

In this special bonus episode, we’ll spotlight one of the many rare conditions that deserves more attention and resources. Chronic inflammatory demyelinating polyneuropathy, more commonly known as CIDP, is a rare neurological condition that causes progressive weakness, impaired mobility, and reduced sensation in the arms and legs. Guests, Scott and Crystal, discuss how each of their lives were drastically impacted by CIDP. When Scott, a choreographer, was diagnosed, he had to learn to channel his creativity into new mediums. While Crystal, a former pharmaceutical executive who was well-versed in rare conditions, found herself diagnosed with one. Despite their different backgrounds, they’ve both found that compassion, community, and continually engaging in proper care has taught them how to cope with the adjustments they have had to make in their lives.

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Avsnitt(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 Juli 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 Juli 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 Juni 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 Juni 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 Maj 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 Maj 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 Dec 202529min

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