CAH PULSE

CARES Foundation
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  • العلوم
  • يتم التحديث شهريًا
CAH PULSE

CAH Pulse takes us on a journey to educate and bring attention to the challenges and triumphs of individuals living with Congenital Adrenal Hyperplasia (CAH). Each month patients, family members, medical professionals, researchers and caregivers share their stories, experiences and advice living with this challenging condition. Our hope is to further connect and champion this incredible community. *This podcast was recorded under a SAG-AFTRA Collective Bargaining Agreement*

الحلقات

  1. ١٢ شعبان

    Season 2 | Episode 5: Raelie: CAH Does Not Define THIS Ten Year Old!

    Is ten-year-old Raelie unphased by her CAH? Find out in this important episode of CAH Pulse where Stephanie and Dina speak with Amanda and her strong, brave and laid back 5th grade daughter, Raelie. This insightful mother daughter duo gives us an up-close view through the window of their daily lives navigating and troubleshooting life with this rare condition.  Amanda explains their family hardships as well as their successes in managing her daughter's CAH, from her unsurprising fears as a mom trying to keep Raelie safe, to her hopes that the struggle will become less and less as Raelie grows so that her daughter can live life to its fullest like a typical kid, should.   Amanda's unapologetic approach to parenting has helped Raelie be the responsible, informed kid she is without allowing CAH to define her. Also, Dina hands us some hopeful news about the progress of CAH treatments as well as news of an officially approved drug!

    ٣٦ من الدقائق

  2. ٧ رجب

    Season 2 | Episode 4: Abby: CAH Mom? Or NASCAR Driver!

    In another compelling episode, Dina and Stephanie introduce us to Abby, a mom of two small boys, one of which is her “salt waster”. Little Nash is only seven months old but he is already doing amazing things like swallowing medication in pill form and being the happiest joyful baby Abby could have hoped for.   However, not everything with baby Nash is status quo. Yes, although proving to be challenging, his family is managing his CAH quite well. Except for one night when her husband was out of town, Abby was faced with what to do when baby Nash was throwing up uncontrollably and turned a shade of white she had never seen before. What unfolds next is a learning experience every new parent who has a baby living with CAH should hear.   In this episode, Abby tells her frightening story about what she was sure was her baby’s first adrenal crisis. From her NASCAR ride to the hospital, to telling her 7 month old not to be so dramatic during a blood draw, to finally explaining emphatically to the doctors what she knows her baby needs, Abby is a true crusader as a new CAH mom. Her super power has been learning as she goes from a group of doctors and advocates but above all, she realizes she is learning the most from her own experiences, understanding what works best for her child on his life-long journey with CAH.

    ٣٢ من الدقائق

  3. ٢٦‏/٠٤‏/١٤٤٦ هـ

    Season 2 | Episode 3: Ryan: The Son of a Rainbow Maker

    In this memorable episode, Ryan, who has seemed to manage his classic salt wasting CAH head-on with an organized, matter of fact approach, has been faced with new challenges to consider now that he is in his 30's.  Ryan's mom, Heidi, knew in his first 2 weeks of life that something was just not right with her baby and thanks to her intuition and diligence she did not stop until the hospital found a diagnosis. Once she was told her newborn had CAH, she began her quest to give Ryan the very best life she could, filled with independence, knowledge, responsibility and most of all positivity. Ryan credits his mom for being his rock, leading him to live a typical life filled with adventure, fun and love.   Join Stephanie and Dina as they visit with Ryan and unveil how he has navigated living with CAH from elementary school, through college and recently marriage as well as his difficult relationship with the powerful steriod "Dex" and how grateful he is for every one in his life who has helped him on his journey with this rare condition.

    ٣٨ من الدقائق

  4. ٣٠‏/٠٢‏/١٤٤٦ هـ

    Season 2 | Episode 2: Lydia: "I had no idea getting married and having children was a thing"

    In this episode of CAH Pulse, Stephanie and Dina speak with Lydia who was diagnosed with classic CAH at birth and although she received relatively good medical care from the start, she had little understanding about her condition.  As a young adult, Lydia reveals that she foolishly decided to test the importance of taking her medication by eliminating it altogether.   She also explains how her world took a positive turn after college when she began speaking with a therapist and ultimately the CARES Foundation. For the first time in her life she was able to regularly meet and open up with women who are living with CAH which gave her a new appreciation, understanding and excitement for her future.  Today, Lydia's story includes a loving husband, a toddler son and a drive to help others with CAH so that they know that they too can live typical, full lives filled with milestones, hope and most of all love.

    ٣٨ من الدقائق

  5. ٠٩‏/١١‏/١٤٤٥ هـ

    Season 2 | Episode 1: Marc: Living Life to it's Fullest - "Nothing Holds Me Back"

    Marc wasn't formally diagnosed with salt wasting CAH until he was the age of 3. Up to that point, Marc's mother had spent his infant and pre-school years simply trying to prevent him from vomiting all the time. The only remedy that seemed to work was constant high doses of salt. Lots and lots of salt. Although she was percieved as a neurotic helicopter first time mother, and doctors simply didn't value her hunches and her conviction that something was not right, her instincts were spot on and in the end this salt heavy diet saved her child's young life. Then, things started to make sense when Mar'c little brother was born and instantly had a life threatening adrenal crisis. Once his baby brother was diagnosed and treated for salt wasting CAH they realized marc's mother wasn't crazy after all...and so begins a life journey for 2 brothers learning how to advocate for themselves, take their own medicine, play sports (even in the heat of the summer) and live life to it's fullest without pretense or worry.  Join Dina and Stephanie as they speak with Marc and hear his inspiring story of hope and relief in the face of a life long incurable condition. Marc's calm and poise will leave you embracing his empowering direction for adults, parents and kids growing up with salt wasting CAH.

    ٣٨ من الدقائق

  6. ١٨‏/٠٩‏/١٤٤٥ هـ

    Season 1 | Episode 6: "The Hospital Refused to Recognize my Daughter as a Girl"

    Stephanie and Dina learn the startling details of David and Brianne’s CAH journey with their little girl who was born into an uncertain world. Not only was her birthday during the height of the Covid 19 pandemic but their newborn was diagnosed with salt-wasting CAH in a hospital with medical professionals who knew little to nothing about the condition. David and Brianne open up about their harrowing journey from their daughter’s adrenal insufficiency to her ambiguous genitalia.

    ٣٩ من الدقائق

  7. ١٨‏/٠٨‏/١٤٤٥ هـ

    Season 1 | Episode 5: Lindsey - "I Wish I Had Known More When I Was 16, 15 even 14"

    "We can assume kids are gonna have questions; so create a relationship outside of CAH and the rest will follow". One of the poignant thoughts belonging to Lindsey, a warm hearted, outspoken young woman who shares her compelling story of growing up in the midwest as a typical girl with friends, playing sports, going to college and now at 30, working as a geographic information systems technician. However, atypically, she shares how she humbly navigates life unsure of the full details of her CAH.  In this impactful episode Lindsey opens up to Dina and Stephanie about many topics including an over due conversation she wishes she had had 20 years ago as well as a detailed account of her recent life-threatening adrenal crisis, a first on CAH Pulse.   Finally, Lindsey unlocks a valuable lesson which may change the way parents speak to their children, whether r not their child is living with CAH.

    ٣٧ من الدقائق

  8. ١٨‏/٠٧‏/١٤٤٥ هـ

    Season 1 | Episode 4: Trust Yourself - College Life with CAH

    There are varying degrees of fear that parents experience while raising a child with CAH. These fears are often from the challenges of medicating their child properly to ensure their safety from a looming adrenal crisis.  Understandably, anxiety and worry can be off the charts. But Cares Foundation wants you to feel rest assured, with the proper attention to detail and care management those with CAH can live a typical life!  And Joey, is living proof. Join Dina and Stephanie as they speak with Joey a sophomore at Duke University, who claims that trusting yourself is one of the keys to living with CAH successfully as a collage coed. He explains how he has made it possible to experience college, away from home, taking classes and enjoying his time in the dorm with friends just as a typical student would! Joey is an exceptional, resilient and responsible 19 year old who unlocks his secrets to transitioning from being a child to becoming a young adult living on his own with CAH.

    ٣٤ من الدقائق

  9. ٠٦‏/٠٦‏/١٤٤٥ هـ

    Season 1 | Episode 3: Lesley Part 2 - ”I Don’t Want Others To Feel Like I Did”

    Despite her difficult journey, Lesley, who grew up in a children's home in England, continues her explanation of how she moved to the states and got the help she needed after living most of her life not knowing she had CAH. This is the second of a 2 part series where Lesley wraps up her inspiring story of survival, connections and giving back.

    ٢٩ من الدقائق

  10. ٢٤‏/٠٥‏/١٤٤٥ هـ

    Season 1 | Episode 2: Lesley Part 1 - Feeling Lucky

    When Lesley's mom was unable to care for her, she was given up to the courts of England. Join Stephanie and Dina as Lesley shares her lowest of lows, love and loss, misinformation and surgeries she was never told why she had. Living most of her life unknowingly with CAH, Lesley’s is a story of survival, victory, resilience, giving back and feeling lucky.

    ٣٠ من الدقائق

  11. ٢٩‏/٠٤‏/١٤٤٥ هـ

    Season 1 | Episode 1: Connections - You Are Not Alone

    Connecting with someone who knows your fears and challenges is a crusade Dina Matos, Executive Director of Cares Foundation and Stephanie Erb, long time career actress, advocate and mom of a grown child with Congenital Adrenal Hyperplasia have been on together. They bring us this compelling first episode of CAH Pulse, a podcast born and bred to educate, connect and give hope to those living with this challenging rare condition. Here Stephanie tells her shocking story of adopting a child at birth with CAH, a rare genetic disease, and becoming a strong advocate for others with the condition and Dina who explains after hearing a parent ask "how long is my child going to live?" one too many times, exactly why she has such heartfelt dedication to helping those living with CAH.  After hearing Dina and Stephanie's introduction, you will be left with a world of hope for these patients as well as the message that a CAH child can indeed live a full, typical and beautiful life. Join Dina and Stephanie on their first of many conversations to illuminate the value of this incredible CAH village and how there is always room for more to come along for the ride.

    ٣٠ من الدقائق
  • ١١ حلقة

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حول

CAH Pulse takes us on a journey to educate and bring attention to the challenges and triumphs of individuals living with Congenital Adrenal Hyperplasia (CAH). Each month patients, family members, medical professionals, researchers and caregivers share their stories, experiences and advice living with this challenging condition. Our hope is to further connect and champion this incredible community. *This podcast was recorded under a SAG-AFTRA Collective Bargaining Agreement*

المعلومات

  • صناع العمل
    CARES Foundation
  • سنوات النشاط
    ١٤٤٥ هـ - ١٤٤٦ هـ
  • الحلقات
    ١١
  • التقييم
    ملائم
  • حقوق النشر
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  • موقع البرنامج على الويب
    CAH PULSE

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