Cystinosis Rare: A Journey Into the Unknown - Season 2

Hosts:

Jana Healy, Sara Healy, and Briana Dundon

Contributor/IT:

Steve Schleuder

Podcast Editor:

Steve Schleuder

Guests:

Gracie Smith (ALAB Member )

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.

Samantha Circello (ALAB Member )

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

Lily Haynes (ALAB Member )

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!

____________________________________________

SYNOPSIS

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.

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.

Hosts

Jana Healy, Sara Healy, Briana Dundon, Steve Schleuder

Podcast Editor

Steve Schleuder

Guests

Samantha Sauer

Patient Navigator with the Patient Helpline, a director of the Patient Helpline, and a Rare Disease patient with a handful of diagnoses.

Levi Peterson

Patient Navigator and Resource Coordinator with Patient Helpline, and a Rare Disease Patient with Behcet's and IIH (Idiopathic Intracranial Hypertension).

Deanna Javier

Full-time Paraprofessional, Mother of a daughter with a few developmental disabilities, and a Rare Disease Patient with Ankylosing Spondylitis and other diagnoses.

____________________________________________

In This episode of Cystinosis Rare: A Journey Into The Unknown we venture into the broader chronic disease world and discuss with our guests Levi Paterson, Samantha Sauer, and Deanna Javier the realities of trying to be a working adult while managing a chronic illness and the joys and pains of everyday life.

____________________________________________

Resources/ORGs mentioned/related to Episode

JAN - Job Accommodation Network

Patients Rising | Patient Empowerment & Advocacy

Patient Helpline

Cystinosis Research Network

Ticket to Work Program

Hosts

Jana Healy, Sara Healy, Steve Schleuder

Moderator

Cheryl Simoens

Guests

Courtney Penner, Devin Ador,

Editor

Steve Schleuder

Synopsis

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.

The Adult Leadership Advisory Board (ALAB) is welcoming 2023 with a conversation with mothers living with cystinosis. Listen in as moms to toddlers and teens get candid about burnout, health and what it takes to raise children while living with a rare disease.   To learn more about the ALAB, visit ALAB: Adult Leadership Advisory Board (cystinosis.org)

This podcast episode of Cystinosis Rare: Journey Into the Unknown, features Talya Miron-Shatz, PhD. Members of the Adult Leadership Advisory Board interviewed Tayla after reading her book, “Your Life Depends On It: What You Can Do To Make Better Choices About Your Health”.   Listen to hear more about medical decision making and some of the difficult conversations we should consider having today. 

Dr. Miron-Shatz's website is: Talya Miron-Shatz (talyamironshatz.com). If you are interested in reading Dr. Miron-Shatz's book you can find it here Your Life Depends On It: The Book – Talya Miron-Shatz (talyamironshatz.com).

We had the pleasure of interviewing Beacon about their organization. They are a nonprofit UK-based organization that helps rare disease organizations. They often help small and voluntary organizations to form, grow, and professionalize. To hear more about this nonprofit organization, feel free to listen to our interview with them.

HOSTS: Steve Schleuder, Jana Healy, Sara Healy, Briana Dundon

GUESTS: Ethan Krenzer, Emily Mello

MODERATOR: Maya Doyle, MSW, PhD, LCSW-R

In this episode of “Cystinosis Rare: Journey Into the Unknown”, we discuss coping mechanisms that we as adults with Cystinosis have developed to cope with having Cystinosis. Please be sure to subscribe and sign up for alerts each time a new episode is posted. To learn more about ALAB, a group comprised entirely of adults living with cystinosis, please visit https://cystinosis.org/alab.

On this episode an anonymous Cystinosis community member shares her vaccination story. Also on this episode, Dr. Emily Ricotta, a Research Fellow and Infectious Disease Epidemiologist in the Division of Intramural Research at the National Institute of Allergy and Infectious Diseases, answers questions related to COVID-19 and Vaccinations. 

After you listen to the episode let us know what you thought about the episode in this quick survey: https://www.surveymonkey.com/r/ALABsurvey

On this episode of “Cystinosis Rare: Journey Into the Unknown” we discuss dealing with mental and emotional issues related to living with a chronic illness during the pandemic. Kerry Heckman, MSW, LICSW from the Center for Chronic Illness joins the Adult Leadership Advisory Board (ALAB) for this conversation. Please be sure to subscribe and sign up for alerts each time a new video is posted. To learn more about ALAB, a group comprised entirely of adults living with cystinosis, please visit https://cystinosis.org/alab.