Artwork

תוכן מסופק על ידי MDA Quest Podcast and Muscular Dystrophy Association. כל תוכן הפודקאסטים כולל פרקים, גרפיקה ותיאורי פודקאסטים מועלים ומסופקים ישירות על ידי MDA Quest Podcast and Muscular Dystrophy Association או שותף פלטפורמת הפודקאסט שלו. אם אתה מאמין שמישהו משתמש ביצירה שלך המוגנת בזכויות יוצרים ללא רשותך, אתה יכול לעקוב אחר התהליך המתואר כאן https://he.player.fm/legal.
Player FM - אפליקציית פודקאסט
התחל במצב לא מקוון עם האפליקציה Player FM !

1: Episode 1 : The Beginning: Receiving a Diagnosis

51:13
 
שתפו
 

Manage episode 299008254 series 2954269
תוכן מסופק על ידי MDA Quest Podcast and Muscular Dystrophy Association. כל תוכן הפודקאסטים כולל פרקים, גרפיקה ותיאורי פודקאסטים מועלים ומסופקים ישירות על ידי MDA Quest Podcast and Muscular Dystrophy Association או שותף פלטפורמת הפודקאסט שלו. אם אתה מאמין שמישהו משתמש ביצירה שלך המוגנת בזכויות יוצרים ללא רשותך, אתה יכול לעקוב אחר התהליך המתואר כאן https://he.player.fm/legal.
For anyone with NMD, the journey begins with a diagnosis…a name for the symptoms that are manifesting. In this episode, we will dive into that conversation from multiple perspectives - an individual diagnosed in infancy, an individual diagnosed in early adulthood and a parent who went on the journey as an advocate for their child. We will talk about each of their stories and the path they took to get a diagnosis, how it impacted their lives, how they’ve learned to live with it, what’s been hard, what’s been easy-er, and how they have coped and made a life that works for them.
To learn more about the Muscular Dystrophy Association, the services we provide, how you can get involved, and to subscribe to Quest Magazine or to Quest Newsletter, please go to mda.org/quest. The Newborn Screening Program truly saves lives. If you want to join our effort to ensure every newborn in the country is screened for conditions like SMA or Pompe disease, join MDA’s grassroots advocacy program. You can sign up today at mda.org/advocacy or text MDAUSA to 504-57.
Transcript
Guests:
Paloma Juarez
Paloma Juarez and her husband Brian Way are parents to Vaun, 5 years old, and twins Koen and Zavier, almost 10 months old. Vaun and Koen both have Infantile Onset Pompe's disease. The family lives in Prairie Village, KS.
Instagram: https://www.instagram.com/palomajuarezplus3
Chris Anselmo
Chris Anselmo works at the Muscular Dystrophy Association (MDA) in a partnership management role. Chris lives with one of the conditions MDA covers - Limb-Girdle Muscular Dystrophy type 2B (LGMD2B). Chris was diagnosed with the disease when he was 18 years old, the result of a routine blood test after a car accident and before he had any physical symptoms. Today, Chris is 34 and has lived with increasing muscle weakness for the last 13 years.
LinkedIn: https://www.linkedin.com/in/christopher-anselmo-31aa2a7
Twitter: https://twitter.com/chris_anselmo
Mindy Henderson
Mindy Henderson is your host, and happens to have been diagnosed with Spinal Muscular Atrophy, type 2 when she was 15 months old. Today, Mindy is the host of this podcast, and is also a motivational speaker and a writer, with her first book set to hit book stores in Fall of 2022.
  continue reading

39 פרקים

Artwork
iconשתפו
 
Manage episode 299008254 series 2954269
תוכן מסופק על ידי MDA Quest Podcast and Muscular Dystrophy Association. כל תוכן הפודקאסטים כולל פרקים, גרפיקה ותיאורי פודקאסטים מועלים ומסופקים ישירות על ידי MDA Quest Podcast and Muscular Dystrophy Association או שותף פלטפורמת הפודקאסט שלו. אם אתה מאמין שמישהו משתמש ביצירה שלך המוגנת בזכויות יוצרים ללא רשותך, אתה יכול לעקוב אחר התהליך המתואר כאן https://he.player.fm/legal.
For anyone with NMD, the journey begins with a diagnosis…a name for the symptoms that are manifesting. In this episode, we will dive into that conversation from multiple perspectives - an individual diagnosed in infancy, an individual diagnosed in early adulthood and a parent who went on the journey as an advocate for their child. We will talk about each of their stories and the path they took to get a diagnosis, how it impacted their lives, how they’ve learned to live with it, what’s been hard, what’s been easy-er, and how they have coped and made a life that works for them.
To learn more about the Muscular Dystrophy Association, the services we provide, how you can get involved, and to subscribe to Quest Magazine or to Quest Newsletter, please go to mda.org/quest. The Newborn Screening Program truly saves lives. If you want to join our effort to ensure every newborn in the country is screened for conditions like SMA or Pompe disease, join MDA’s grassroots advocacy program. You can sign up today at mda.org/advocacy or text MDAUSA to 504-57.
Transcript
Guests:
Paloma Juarez
Paloma Juarez and her husband Brian Way are parents to Vaun, 5 years old, and twins Koen and Zavier, almost 10 months old. Vaun and Koen both have Infantile Onset Pompe's disease. The family lives in Prairie Village, KS.
Instagram: https://www.instagram.com/palomajuarezplus3
Chris Anselmo
Chris Anselmo works at the Muscular Dystrophy Association (MDA) in a partnership management role. Chris lives with one of the conditions MDA covers - Limb-Girdle Muscular Dystrophy type 2B (LGMD2B). Chris was diagnosed with the disease when he was 18 years old, the result of a routine blood test after a car accident and before he had any physical symptoms. Today, Chris is 34 and has lived with increasing muscle weakness for the last 13 years.
LinkedIn: https://www.linkedin.com/in/christopher-anselmo-31aa2a7
Twitter: https://twitter.com/chris_anselmo
Mindy Henderson
Mindy Henderson is your host, and happens to have been diagnosed with Spinal Muscular Atrophy, type 2 when she was 15 months old. Today, Mindy is the host of this podcast, and is also a motivational speaker and a writer, with her first book set to hit book stores in Fall of 2022.
  continue reading

39 פרקים

כל הפרקים

×
 
Loading …

ברוכים הבאים אל Player FM!

Player FM סורק את האינטרנט עבור פודקאסטים באיכות גבוהה בשבילכם כדי שתהנו מהם כרגע. זה יישום הפודקאסט הטוב ביותר והוא עובד על אנדרואיד, iPhone ואינטרנט. הירשמו לסנכרון מנויים במכשירים שונים.

 

מדריך עזר מהיר