Patients Make Progress Possible | Hypopara Series: Part 3

Patients Make Progress Possible | Hypopara Series: Part 3

In part 2 of our conversation with Patty Keating, we dive deep into how hypoparathyroidism can affect the whole patient. Patty shares vulnerable moments that highlight symptoms such as brain fog, emphasizing how truly debilitating and isolating it can feel. The conversation also discusses treatment options, specifically how the HypoPARAthyroidism Association has helped to bring an FDA-approved option to market. Patty continues to be a voice for patients with hypoparathyroidism everywhere through her podcast, HypoPARA Unscripted. Watch part 1 of Patty’s interview: https://youtu.be/NZd0N4ztgkA [https://youtu.be/NZd0N4ztgkA]Key Highlights: • Hear how the HypoPARA Association is helping to bring patient voices to the center of care discussions. • Be inspired by Patty’s outlook on life of “we’ll figure it out.” • Hear why symptoms that appear “invisible” can be debilitating, and why the whole-patient care approach is important. • Learn about the work that was done to help bring a treatment option to market for hypoparathyroidism. 00:00 Recap from Part 1 of Patty’s interview 00:39 The First-Ever Treatment Approved for Hypoparathyroidism 8:11 Understanding “Invisible Illness” 12:43 Debilitating Brain Fog, A Personal Experience 16:48 How to Connect with The HypoPARA Association 17:45 Advice to Younger Self 18:35 Closing Remarks Connect with the HypoPARA Association: https://www.hypopara.org/ [https://www.hypopara.org/] https://www.youtube.com/channel/UC8fpei7liF73LFflvU6zZHw [https://www.youtube.com/channel/UC8fpei7liF73LFflvU6zZHw] https://www.instagram.com/hypoparaassoc/ [https://www.instagram.com/hypoparaassoc/] https://www.linkedin.com/company/hypoparathyroidism-association/ [https://www.linkedin.com/company/hypoparathyroidism-association/] About My Hero 360: At My Hero 360, we honor, celebrate, and connect heroes worldwide. By sharing their stories, we aim to inspire and provide hope for humanity. Follow us to hear more incredible stories of unsung heroes who make a difference in the world. Support My Hero 360: https://myhero360.com/ [https://myhero360.com/] https://www.instagram.com/myhero.360/ [https://www.instagram.com/myhero.360/] https://www.tiktok.com/@myhero.360 [https://www.tiktok.com/@myhero.360]Subscribe to this channel for more inspirational stories.

Went in for Surgery, Left With a Lifelong Disease | Hypopara Series: Part 2

In this episode, Kerri Fitzgerald speaks with Patty Keating about her experience as a post-surgical hypoparathyroidism patient. What was supposed to be surgery to address complex tumors on her thyroid became what felt like a life sentence with a chronic health condition. When her journey toward understanding her rare disease took a dangerous turn, resulting in a heart attack, Patty took charge of her life and turned her life sentence into her life’s work. Now the Executive Director of the HypoPARAthyroidism Association, Patty has dedicated herself to elevating the patient voice to spread education and awareness about hypoparathyroidism. Key Highlights: • Hear how Patty Keating developed hypoparathyroidism after surgery that was meant to remove her parathyroids. • Be inspired by how Patty came to understand her new normal and used her leadership skills to advance education and advocacy for this patient population. • Hear why Patty is so passionate about elevating the patient voice in order to improve health outcomes. • Learn about how the HypoPARA Association was a driving force behind the first FDA-approved treatment for this condition. 00:00 Introduction & Background 06:45 Misconceptions: When Treatment Isn’t a Cure 10:10 Turning a Life Sentence into a Life's Mission to Help Others 13:33 The Patient Reality: Beyond the Lab Results 15:45 Helping Clinicians Understand the Whole Patient 17:19 Patient Voices Drive Change on a National Level 19:46 We’re Not Done! Watch Part 2 Connect with the HypoPARA Association: https://www.hypopara.org/ [https://www.hypopara.org/] https://www.youtube.com/channel/UC8fpei7liF73LFflvU6zZHw [https://www.youtube.com/channel/UC8fpei7liF73LFflvU6zZHw] https://www.instagram.com/hypoparaassoc/ [https://www.instagram.com/hypoparaassoc/] https://www.linkedin.com/company/hypoparathyroidism-association/ [https://www.linkedin.com/company/hypoparathyroidism-association/] About My Hero 360: At My Hero 360, we honor, celebrate, and connect heroes worldwide. By sharing their stories, we aim to inspire and provide hope for humanity. Follow us to hear more incredible stories of unsung heroes who make a difference in the world. Support My Hero 360: https://myhero360.com/ [https://myhero360.com/] https://www.instagram.com/myhero.360/ [https://www.instagram.com/myhero.360/] https://www.tiktok.com/@myhero.360 [https://www.tiktok.com/@myhero.360]Subscribe to this channel for more inspirational stories.

A Donor Exchange Program Saves a Life | Stuart Miller

In this episode, Kerri Fitzgerald speaks with Stuart Miller about his health journey with IgA nephropathy. Stuart was diagnosed with the rare kidney condition before there were any FDA-approved treatment options. In 2018, he underwent a kidney transplant through a donor exchange program. His incredible wife was one of the donors who made this possible. Stuart is now the Director of Strategic Planning and Government Affairs for the IgA Nephropathy Foundation, a patient advocacy group dedicated to finding a cure for the condition. Stuart talks about the importance of advocacy efforts to move the needle for rare diseases. Key Highlights: • Hear how Stuart Miller came to understand his IgA nephropathy diagnosis and the difficulty confronting a now lifelong condition that must be managed. • Be inspired by the generosity of a donor exchange program that allows living donors to make a big impact on those in need. • Hear why Stuart was motivated to take an active role within the IgA Nephropathy Foundation and how this organization is helping patients. • Learn about pending legislation that would remove roadblocks for donors to help increase the availability of organ transplants for patients who critically need them. 00:00 Introduction & Background 02:05 Managing IgA Nephropathy With Limited Treatment Options 02:43 A Donor Exchange Program Changes Multiple Lives 05:37 Finding Community: The IgA Nephropathy Foundation 07:22 Expanding and Globalizing Awareness for IgA Nephropathy 09:18 This Pending Piece of Legislation Is Crucial 13:01 Advice to Younger Self 13:32 Closing Remarks Connect with the IgA Nephropathy Foundation: https://igan.org/ [https://igan.org/] About My Hero 360: At My Hero 360, we honor, celebrate, and connect heroes worldwide. By sharing their stories, we aim to inspire and provide hope for humanity. Follow us to hear more incredible stories of unsung heroes who make a difference in the world. Support My Hero 360: https://myhero360.com/ [https://myhero360.com/]https://www.instagram.com/myhero.360/ [https://www.instagram.com/myhero.360/]https://www.tiktok.com/@myhero.360 [https://www.tiktok.com/@myhero.360] Subscribe to this channel for more inspirational stories.

This Infection Changed Everything | Krissa Hoermann

In this episode, Kerri Fitzgerald sits down with Krissa Hoermann, an event florist, to discuss her journey navigating the challenges of C. diff and irritable bowel syndrome symptoms. Krissa shares an honest account of the physical and emotional impact C. diff had on her life, recounting how it left her exhausted and frustrated without a solution for 6 months. She shares how an incredible doctor at Mount Sinai in New York City and a clinical trial finally cured her recurrent C. diff and allowed her to slowly come back to full health and live without fears and constraints. Watch Krissa's original episode on My Hero 360 to learn more. [https://youtu.be/eH_LaMdi92E] Key Highlights: • Hear how Krissa Hoermann came to understand her C. diff diagnosis. • Learn why Krissa took part in a clinical trial that ultimately made an impact on her symptoms. • Hear about how a nutritionist made a big impact on Krissa’s recovery as she regained strength following a long journey with C. diff and IBS. • Be inspired by Krissa’s creations from her event florist company, Daybreak Studio & Farm. Connect with Krissa Hoermann: https://www.daybreakflowers.com/ [https://www.daybreakflowers.com/]https://www.instagram.com/daybreakflowers [https://www.instagram.com/daybreakflowers] About My Hero 360: At My Hero 360, we honor, celebrate, and connect heroes worldwide. By sharing their stories, we aim to inspire and provide hope for humanity. Follow us to hear more incredible stories of unsung heroes who make a difference in the world. Support My Hero 360: https://myhero360.com/ [https://myhero360.com/ ] https://www.instagram.com/myhero.360/ [https://www.instagram.com/myhero.360/]https://www.tiktok.com/@myhero.360 [⁠https://www.tiktok.com/@myhero.360] Listen to Our Heroes’ Stories: Apple Podcasts: https://podcasts.apple.com/us/podcast/my-hero-360/id1870681068 [https://podcasts.apple.com/us/podcast/my-hero-360/id1870681068] Spotify: https://open.spotify.com/show/1LnJ9ce28OkweYcopCZx2L?si=ae174fd84ef44334 [https://open.spotify.com/show/1LnJ9ce28OkweYcopCZx2L?si=ae174fd84ef44334] Amazon Music: https://music.amazon.com/podcasts/aa426e78-fb79-4978-8851-d5aab25cf951/my-hero-360 [https://music.amazon.com/podcasts/aa426e78-fb79-4978-8851-d5aab25cf951/my-hero-360] Subscribe to this channel for more inspirational stories.

Bouncing Back When Life Takes a Hard Left Turn | John B. Grimes

In this special episode, John B. Grimes is back with My Hero 360 with a special announcement: his book is being published tomorrow, February 7. In the book, titled “Destiny Is Debatable,” John shares his experience with bacterial meningitis and how it changed the trajectory of his life. He shares lessons learned and offers inspirational advice for people navigating a challenging time in their life.  Watch John’s original episode on My Hero 360 to learn more about his story. [https://www.youtube.com/watch?v=RHwWBg9wnPg]  Key Highlights:  * Hear about why John B. Grimes wrote this memoir of his experience with bacterial meningitis and subsequent vision loss.  * Learn how the writing experience was cathartic for John and brought back memories from 28 years ago.  * Be inspired by John's sentiment that living is "an act of defiance” after surviving something so few do.  * Hear how to buy the book and connect more with John.  Connect with John Grimes:   https://www.instagram.com/johnbgrimes [https://www.instagram.com/johnbgrimes]      https://www.linkedin.com/in/johnbgrimes/ [https://www.linkedin.com/in/johnbgrimes/]   https://x.com/ambblind [https://x.com/ambblind]   Websites:   https://podcast.johnbgrimes.com/ [https://podcast.johnbgrimes.com/]  https://destinyisdebatable.com/ [https://destinyisdebatable.com/]   About My Hero 360: At My Hero 360, we honor, celebrate, and connect heroes worldwide. By sharing their stories, we aim to inspire and provide hope for humanity. Follow us to hear more incredible stories of unsung heroes who make a difference in the world.  Support My Hero 360:  https://myhero360.com/ [https://myhero360.com/]   https://www.instagram.com/myhero.360/ [https://www.instagram.com/myhero.360/]    https://www.tiktok.com/@myhero.360 [https://www.tiktok.com/@myhero.360]    Listen to Our Heroes’ Stories:  Apple Podcasts: https://podcasts.apple.com/us/podcast/my-hero-360/id1870681068 [https://podcasts.apple.com/us/podcast/my-hero-360/id1870681068]   Spotify: https://open.spotify.com/show/1LnJ9ce28OkweYcopCZx2L?si=ae174fd84ef44334 [https://open.spotify.com/show/1LnJ9ce28OkweYcopCZx2L?si=ae174fd84ef44334]  Amazon Music: https://music.amazon.com/podcasts/aa426e78-fb79-4978-8851-d5aab25cf951/my-hero-360 [https://music.amazon.com/podcasts/aa426e78-fb79-4978-8851-d5aab25cf951/my-hero-360]   Subscribe to this channel for more inspirational stories.