Cystinosis Rare: A Journey Into the Unknown

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.

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.

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. 

Our guests are Shannon Keizer, Victor Gardner, Rebekah Palmer, Eddie Carter Langley Jr., and Gracie Smith. 

Enjoy and please fill out our survey to let us know what we can do to improve or perhaps what you would like to see in our future episodes!

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. 

We have four special guests living with cystinosis along with your hosts Jana and Sara Healy, Cheryl Simoens and Steve Scheudler.

Part 1 of Episode 3 focuses on healthcare professionals speaking about challenges and guidance for youth transitioning to adult care on their journey with cystinosis. 

Guest Speakers: Dr. Paul Grimm, Dorelia Rivera 

Grief and loss in the Cystinosis community with a Q&A section facilitated by a certified social worker and professor with many years of experience in the Cystinosis community. We also share our perspectives and stories on the current Covid-19 pandemic with two special guests living with Cystinosis.

Produced by : Jana and Sara Healy, Steve Scheudler and Cheryl Simoens

Special Guest: Maya Doyle

Grief and loss in the Cystinosis community with a Q&A section facilitated by a certified social worker and professor with many years of experience in the Cystinosis community. We also share our perspectives and stories on the current Covid-19 pandemic with two special guests living with Cystinosis.

Produced by : Jana and Sara Healy, Steve Scheudler and Cheryl Simoens

Special Guest: Maya Doyle

Grief and loss in the Cystinosis community with a Q&A section facilitated by a certified social worker and professor with many years of experience in the Cystinosis community. We also share our perspectives and stories on the current Covid-19 pandemic with two special guests living with Cystinosis. 

Produced by : Jana and Sara Healy, Steve Scheudler and Cheryl Simoens

Special Guest: Maya Doyle

Our first episode focuses on positive aspects and inspiring stories of adults living with Cystinosis. 

We have two guest appearances, our first guest is William Brink sharing his story on how he was affected by the loss of his brother and later gained the courage to begin weightlifting. Our second guest is Shannon Keizer sharing her journey on shifting her perspective from low mental health and continual health issues to fuel her drive to begin a nursing degree. The hosts of each episode are Jana and Sara Healy, Steve Scheudler and Cheryl Simoens, adults living with Cystinosis.