by CRN: Adult Leadership Advisory Board
A podcast for the Cystinosis community and general public, sharing experiences and both educating and supporting the affects of this rare genetic disease. Credits: Steve Schleuder, Jana Healy, Sara Healy, Cheryl Simoens Hosts: Steve Schleuder, Jana Healy, Sara Healy WANT TO LISTEN TO SEASON 1! Check it out here: https://open.spotify.com/show/2mQfY55IraUvJppRazO8Tk?si=LNp83ZRgTUmd8BfuN8T0lg
Language
🇺🇲
Publishing Since
6/2/2021
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September 28, 2024
<p>Hosts:</p><p>Jana Healy, Sara Healy, and Briana Dundon</p><p><br></p><p>Contributor/IT:</p><p>Steve Schleuder</p><p><br></p><p>Podcast Editor:</p><p>Steve Schleuder</p><p><br></p><p>Guests:</p><p>Gracie Smith (ALAB Member )</p><p><br></p><p>Gracie, from Milledgeville, Georgia, enjoys spending time with friends and family, performing on stage, camping, dancing, and spending time with her dogs. She is passionate about advocating for the Cystinosis community and joined this episode to share her experiences.</p><p><br></p><p><br></p><p>Samantha Circello (ALAB Member )</p><p><br></p><p>Samantha is a big Taylor Swift fan. She’s been on the Era’s Tour twice. She is currently going to Cosmetology School and advocating for the Cystinosis community as a member of ALAB</p><p><br></p><p><br></p><p>Lily Haynes (ALAB Member )</p><p><br></p><p>Lily lives in Canton, Georgia, and works at a preschool, where she is passionate about working with children. Some of her interests include shopping, traveling, relaxing by the pool, spending time with family, enjoying the color pink, spending time with friends, and cooking. Living with Cystinosis, she is dedicated to helping and being involved in the community. She’s excited to be part of this experience!</p><p><br></p><p><br></p><p><br></p><p>____________________________________________</p><p>SYNOPSIS</p><p><br></p><p>Get ready for a deep dive into life with Cystinosis in the latest episode of "Cystinosis Rare: A Journey Into The Unknown." Our younger ALAB board members share their candid insights, discussing social challenges and bullying, and addressing misconceptions about their health. We will also cover discussions about how Cystinosis affects their daily routines and hobbies.</p><p><br></p><p>Join us as we talk about navigating the limitations of Cystinosis and the strategies we use to adapt. This episode includes a thought-provoking discussion between younger and older adults living with Cystinosis, highlighting generational differences in managing the condition and recent advancements. We will address critical topics like how to talk to medical professionals who won’t listen to you, transitioning to adult care, and finding the positives in life with Cystinosis. Finally, we examine the crucial role of family & friends’ awareness and support in helping us navigate the everyday challenges of living with this condition.</p>
April 22, 2024
<p><br></p> <p><strong>Hosts</strong></p> <p>Jana Healy, Sara Healy, Briana Dundon, Steve Schleuder</p> <p><br></p> <p><strong>Podcast Editor</strong></p> <p>Steve Schleuder</p> <p><br></p> <p><strong>Guests</strong></p> <p><em>Samantha Sauer</em></p> <p>Patient Navigator with the<a href="https://patienthelpline.org/" target="_blank" rel="noopener noreferer"> Patient Helpline</a>, a director of the <a href="https://patienthelpline.org/" target="_blank" rel="noopener noreferer">Patient Helpline</a>, and a Rare Disease patient with a handful of diagnoses.</p> <p><br></p> <p><em>Levi Peterson</em> </p> <p>Patient Navigator and Resource Coordinator with <a href="https://patienthelpline.org/" target="_blank" rel="noopener noreferer">Patient Helpline</a>, and a Rare Disease Patient with <a href="https://www.mayoclinic.org/diseases-conditions/behcets-disease/symptoms-causes/syc-20351326" target="_blank" rel="noopener noreferer">Behcet's</a> and<a href="https://my.clevelandclinic.org/health/diseases/21968-idiopathic-intracranial-hypertension" target="_blank" rel="noopener noreferer"> IIH (</a>Idiopathic Intracranial Hypertension). </p> <p><br></p> <p><em>Deanna Javier</em></p> <p>Full-time Paraprofessional, Mother of a daughter with a few developmental disabilities, and a Rare Disease Patient with <a href="https://www.mayoclinic.org/diseases-conditions/ankylosing-spondylitis/symptoms-causes/syc-20354808" target="_blank" rel="noopener noreferer">Ankylosing Spondylitis</a> and other diagnoses.</p> <p><br></p> <p><br></p> <p>____________________________________________</p> <p><strong> SYNOPSIS</strong></p> <p><br></p> <p>In This episode of <strong>Cystinosis Rare: A Journey Into The Unknown</strong> we venture into the broader chronic disease world<em> </em>and discuss with our guests<strong> Levi Paterson</strong><em>, </em><strong>Samantha Sauer,</strong><em> and </em><strong>Deanna Javier </strong>the realities of trying to be a working adult while managing a chronic illness and the joys and pains of everyday life.</p> <p><br></p> <p>____________________________________________</p> <p><br></p> <p><strong>Resources/ORGs mentioned/related to Episode</strong></p> <p><em></em><a href="https://askjan.org/">JAN - Job Accommodation Network </a></p> <p><br></p> <p><a href="https://www.patientsrising.org/">Patients Rising | Patient Empowerment & Advocacy</a></p> <p><br></p> <p><a href="https://patienthelpline.org/" target="_blank" rel="noopener noreferer">Patient Helpline</a></p> <p><br></p> <p><a href="https://cystinosis.org/support-resources/alab/" target="_blank" rel="noopener noreferer">Cystinosis Research Network</a></p> <p><br></p> <p><a href="https://www.ssa.gov/work/" target="_blank" rel="noopener noreferer">Ticket to Work Program</a><strong> </strong></p> <p><br></p> <p><br></p>
November 22, 2023
<p><strong>Hosts</strong></p> <p>Jana Healy, Sara Healy, Steve Schleuder</p> <p><br></p> <p><strong>Moderator</strong></p> <p>Cheryl Simoens </p> <p><strong>Guests</strong></p> <p>Courtney Penner, Devin Ador, Ashley Abedini</p> <p><br></p> <p><strong>Editor</strong></p> <p>Steve Schleuder</p> <p><strong>Synopsis</strong></p> <p>This podcast episode is a conversation between adults with Cystinosis about Medical Trauma related to living with a chronic illness. The episode is focused on bringing awareness to the challenges and traumatizing effects of experiencing medical events like surgeries, multiple diagnoses, and the stresses that come with not knowing what the future may look like. It is an episode focused on mental health with relation to medical trauma in people with Cystinosis.</p> <p> </p>
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A podcast for the Cystinosis community and general public, sharing experiences and both educating and supporting the affects of this rare genetic disease.
Credits: Steve Schleuder, Jana Healy, Sara Healy, Cheryl Simoens
Hosts: Steve Schleuder, Jana Healy, Sara Healy
WANT TO LISTEN TO SEASON 1! Check it out here: https://open.spotify.com/show/2mQfY55IraUvJppRazO8Tk?si=LNp83ZRgTUmd8BfuN8T0lg
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