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*
📻 Siste episoder av CAH PULSE
Her er de nyeste episodene tilgjengelige via RSS-feeden:
Season 2 l episode 11 Dimitri: The Long Game of Drug Discovery (00:38:21)
In this episode of CAH Pulse, host Stephanie Erb and CARES Foundation director Dina Matos sit down with distinguished scholar Dr. Dimitri Grigoriadis of Neurocrine Biosciences for a rare behind-the-scenes look at how medications are discovered, tested, and brought to life. From the origins of CRF research to the challenges of treating a rare disease like CAH, Dimitri explains the drug-development journey in an accessible, fascinating way—complete with scientific surprises, first hand patient insights and the grit it takes to spend decades pursuing a single advancement. From basements to breakthroughs and an unwavering commitment to helping patients living with CAH, join Stephanie and Dina as they uncover Dr Dimitri's journey of research, perseverance and success.
Season 2 l Episode 10: Brittany: Demanding Change After a Lack of Answers and Getting Nowhere (00:38:24)
In this uplifting episode, Stephanie and Dina speak to Brittany, an outspoken 29-year-old living with CAH. A self described "open book", Brittany shares her life's journey from her diagnosis as a toddler, thanks to her mother's intuition and advocacy, to her drive to find a cure for CAH. Along the way Brittany reveals she has suffered from weight gain, severe acne and even a femoral stress fracture. Her path also includes a life changing moment after meeting others for the first time who are also living with CAH, with help from CARES. Brittany's collective experiences have inspired her to make a difference in the CAH community by helping to connect others. She makes clear her inclination that there be more research, more mental health understanding and awareness, to eradicate the use of steroids and to finally find a cure. Oh, and don't forget the donuts...
Season 2 | Episode 9: Kristina: "We're going to call your baby...'Baby'" - Removing the Stigma from CAH (00:42:27)
In this touching episode, Stephanie and Dina speak to Kristina, a young mom to 2 little girls who's younger daughter lives with salt wasting CAH. Kristina recalls her journey from giving birth to Franny through her now fifteen months of life, including feeding routines, hospital visits, medication and explaining her condition to family, day care and friends. Unsurprisingly, the day Franny was born, Kristina was told "something is wrong with your baby, your baby has ambiguous genitalia". Grappling with not knowing what that could have meant, Kristina simply replied, "is my baby going be alright?" and "is she going to live?" Due to the all too familiar lack of knowledge and professionalism on the hospital's behalf, Kristina was left alone, terrified, contemplating her new life with a baby she had yet to meet.
Kristina's story also includes the hospital's suggestion to not add "female" to Franny's birth certificate, a NICU doctor who would only identify Franny as the "baby" and Kristina's subsequent overwhelming feeling of disappointment and fright for what the future held for her family...especially her brand new baby girl Franny.
With Stephanie's and Dina's wisdom and experience, the three women embark on a voyage to squash the stigma attached to CAH with the goal to give Franny and other children and adults living with CAH a healthy life free of stress, judgement and grief.
Season 2 | Episode 8: Lesley and Louise: No Shame! Putting an End to the Secrecy of CAH (00:38:12)
In this gripping episode Dina and Stephanie tackle a most important and controversial topic, putting an end to the dangerous stigma which far too many children (both boys and girls), parents and adults living with CAH encounter, causing adverse effects on their lives. This episode is a crusade to make a difference to the lives of so many who live in darkness and risk thanks to the dangerous and unnecessary shame that often exists with CAH.
Joining Dina and Stephanie are CARES Foundation Pioneer Award winner Lesley Holroyd and Associate Dean of Nursing at UVA, and mom to Joey, Louise Flemming who share their expertise regarding shame and secrecy attached to this life threatening condition. How can we "normalize" CAH? How can we ensure the medical professionals in every hospital are educated about CAH so as to end the spread of judgement before it begins? Do YOU keep your CAH, or your child's CAH, a secret? Dina wants to hear from you!
Hear their stories, share their tears and be inspired. See what can be achieved when 4 brilliant, driven women with strength, knowledge and first hand experience put their heads together to help better this amazing community.
Season 2 | Episode 7: "Go Live Your Life as Normally as Possible" But...Nothing About CAH is Normal (00:34:56)
In the mid 1960's, Tim was diagnosed with CAH just weeks after he was born. His CAH simply didn’t set off many alarms with his medical team, nor his parents. As a result, he seemed to breeze through time with little challenges and even went 50 years without a single adrenal crisis! However, Tim had learned some difficult news at the age of 30, thanks to the long term effects of prescribed prednisone, when a bone scan showed that he had severe osteoporosis. At 30 years old, Tim had the bone density of a woman in her 80’s. He was finally feeling the effects of CAH. Up to that point his doctors told him to just "go live your life as normally as possible" but nothing is "normal" about CAH.
Join Stephanie and Dina as they speak to Tim, a dad to identical twin daughters and a champion of Cares Foundation, about his sudden change in medication, the physical challenges he experienced as a result, as well as an uncharacteristic and overwhelming feeling of sadness. Tim’s roller coaster journey gives us the main facets and challenges of CAH but will leave you with much hope for the future.
Season 2 | Episode 6: Dr Su: Words of Wisdom: Clearing up the Confusion of Stress Dosing (00:32:32)
In this masterfully eye-opening episode, Stephanie and Dina pick the brilliant mind of CARES Foundation's Medical Director, and Professor & Pediatric Endocrinologist at the NY Presbyterian Weill Cornell Medical Center, Dr Karen Su. Dr. Su helps to clear up the confusion over "stress dosing" an adult or a child living with CAH.
Of great importance to Stephanie & Dina has been to address the idea that a stress dose needs to be administered when someone is predicted to have emotional stress. Their goal has been to highlight exactly when to administer added hydrocortisone (as well as how much!), and Dr Su is just the person to set the record straight. Do you typically stress dose before taking an exam? Before an important speech or running a marathon? Dr. Su shares her many words of wisdom by answering hypotheticals, solving scenarios and revealing the health concerns behind too much cortisol and the long term effects of Dexamethasone.
Bring your notebook and take full advantage of all of the insightful and thought-provoking free professional insight from one of the top CAH endocrinologists in the country.
Season 2 | Episode 5: Raelie: CAH Does Not Define THIS Ten Year Old! (00:35:46)
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!
Season 2 | Episode 4: Abby: CAH Mom? Or NASCAR Driver! (00:31:36)
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.
Season 2 | Episode 3: Ryan: The Son of a Rainbow Maker (00:37:34)
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.
Season 2 | Episode 2: Lydia: "I had no idea getting married and having children was a thing" (00:38:17)
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.
Season 2 | Episode 1: Marc: Living Life to it's Fullest - "Nothing Holds Me Back" (00:37:49)
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.
Season 1 | Episode 6: "The Hospital Refused to Recognize my Daughter as a Girl" (00:38:41)
Welcome to another astonishing CAH story. In this 6th episode of CAH Pulse, 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 atypical genitalia. They explain the hardships of giving birth with COVID-19 protocols, including social distancing and the miscommunication it had caused. They also lament about the hospital staff's position of not recognizing their daughter as a girl with the recommendation that they wait to name their baby.
Join Stephanie and Dina as they uncover the shocking lack of understanding, empathy and support this resilient family endured in their 3rd trimester of pregnancy through the first weeks of their precious baby's life.
Season 1 | Episode 5: Lindsey - "I Wish I Had Known More When I Was 16, 15 even 14" (00:37:06)
"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.
Season 1 | Episode 4: Trust Yourself - College Life with CAH (00:33:50)
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.
Season 1 | Episode 3: Lesley Part 2 - ”I Don’t Want Others To Feel Like I Did” (00:28:54)
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.
Season 1 | Episode 2: Lesley Part 1 - Feeling Lucky (00:29:30)
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.
Season 1 | Episode 1: Connections - You Are Not Alone (00:30:26)
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.
Side 1 av 1
CAH PULSE - Gratis RSS Feed for Norsk Podcast | OpenPodMe | OpenPodMe - Åpen RSS for Norske Podcaster
