Cystinosis Rare: A Journey Into the Unknown - Season 2 CRN: Adult Leadership Advisory Board

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.





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SYNOPSIS



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.



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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,
Ashley Abedini



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.