A podcast for the Cystinosis community and general public, sharing experiences and both educating and supporting the affects of this rare kidney disease.
Credits: Steve Scheudler, Jana Healy, Sara Healy, Cheryl Simoens
Cystinosis Rare: A Journey Into the Unknown
Claim This Podcastby CRN: Adult Leadership Board
5.0(4 reviews)
8 episodes
Updated Daily
Accepts GuestsHas Sponsors
Podcast Overview
A podcast for the Cystinosis community and general public, sharing experiences and both educating and supporting the affects of this rare kidney disease. Credits: Steve Scheudler, Jana Healy, Sara Healy, Cheryl Simoens
Language
🇺🇲
Publishing Since
2/29/2020
1 verified contact email on file for Cystinosis Rare: A Journey Into the Unknown
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Recent Episodes
December 13, 2020
Cystinosis Rare: A Journey into the Unknown - Episode 5: Parent Panel Discussion
<p>Episode 5 of the Cystinosis Rare podcast focuses on parents speaking candidly about their experiences of having children with cystinosis; their journeys, challenges, and inspiration.</p> <p><br></p> <p>The guests for our parent panel include Jill Morrill, Jonathan Dicks, and Jana Riley-Kraulik with hosts Sara and Jana Healy, Steve Scheudler and Cheryl Simoens.</p>
November 29, 2020
Cystinosis Rare: A Journey into the Unknow - Episode 4
<p>Episode 4 focuses on a panel of 4 adults living with cystinosis speaking up about their experiences on bullying, teasing, and negative social impacts and how they managed to cope throughout their individual journeys. </p> <p>Our guests are Shannon Keizer, Victor Gardner, Rebekah Palmer, Eddie Carter Langley Jr., and Gracie Smith. </p> <p><br></p> <p>Enjoy and please <a href="https://www.surveymonkey.com/r/ALABsurvey">fill out our survey</a> to let us know what we can do to improve or perhaps what you would like to see in our future episodes!</p>
August 22, 2020
Transitioning from Youth to Adult through the medical system: Episode 3 - Part 2
<p>This episode focus's on living within Cystinosis transitioning out of youth and into adult care. Topics include medication routine and side effects, support systems and taking on a more independent role as aging occurs. This episode shed's light on a very real conversation about daily life and aging in the rare disease community. </p> <p>We have four special guests living with cystinosis along with your hosts Jana and Sara Healy, Cheryl Simoens and Steve Scheudler.</p>
8 total episodes available
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Frequently asked questions
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- What is Cystinosis Rare: A Journey Into the Unknown?
- How often does this podcast release new episodes?
This podcast updates daily.
- Where can I listen to this podcast?
This podcast is available on 4 platforms including Apple Podcasts, Spotify, and more. You can also use the RSS feed directly.
- Does this podcast accept guests?
Yes, this podcast regularly features guests.
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