Sarc Fighter: Living with Sarcoidosis and other rare diseases

By John CarlinMedicine Health & Fitness Fitness

Sarc Fighter: Living with Sarcoidosis and other rare diseases episodes

September 22 Episode 171 | Promising new genetic research - and how difficulty makes us better
Promising new research identifies three genes that may play a role in why people do or do not get sarcoidosis. Also a look at why hard work makes us feel better going all the way back to the old world philosophers, and how that might help you in your battle with sarcoidosis.

Show notes:
The new Sarcoidosis Study from Sarcoidosis News: https://sarcoidosisnews.com/news/study-identifies-three-genes-influence-sarcoidosis-risk/
Support Brett for the NYC marathon: https://stopsarcoidosis.rallybound.org/2026-team-rally-for-sarc/BrettWittner
Meet all the FSR runners for 2026: https://www.stopsarcoidosis.org/nyc-marathon/
FSR Sarcoidosis Summit: https://www.stopsarcoidosis.org/philadelphia-summit/
FSR helps patients navigate insurance: https://www.stopsarcoidosis.org/foundation-for-sarcoidosis-research-announces-new-partnership-with-patient-advocate-foundation-to-expand-insurance-and-disability-support-for-sarcoidosis-patients/
Sarcoidosis News Pulmonary relapse report: https://sarcoidosisnews.com/news/relapse-common-pulmonary-sarcoidosis-treatment-changes/
MORE FROM JOHN:
Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/
Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier
The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/
Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E
My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/
email me [email protected]
#sarcoidosis #sarcoidosisawareness #kidney #dermatology #cardiacsaroidosis

29 min
September 09 Episode 170 | Brett is running and raising money for the cause. But it may be a struggle.
Brett Wittner has run a lot of marathons. A lot. But when her tried to make a comeback something was wrong with his lungs. Scans showed it was sarcoidosis. Yet, he is running the New York City Marathon as a fundraiser for the Foundation for Sarcoidosis Research. Listen in as he shares his story as a runner and sarcoidosis patient.
Show notes:
Support Brett for the NYC marathon: https://stopsarcoidosis.rallybound.org/2026-team-rally-for-sarc/BrettWittner

Meet all the FSR runners for 2026: https://www.stopsarcoidosis.org/nyc-marathon/

FSR Sarcoidosis Summit: https://www.stopsarcoidosis.org/philadelphia-summit/
FSR helps patients navigate insurance: https://www.stopsarcoidosis.org/foundation-for-sarcoidosis-research-announces-new-partnership-with-patient-advocate-foundation-to-expand-insurance-and-disability-support-for-sarcoidosis-patients/
Sarcoidosis News Pulmonary relapse report: https://sarcoidosisnews.com/news/relapse-common-pulmonary-sarcoidosis-treatment-changes/
MORE FROM JOHN:
Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/
Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier
The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/
Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E
My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/
email me [email protected]
#sarcoidosis #sarcoidosisawareness #kidney #dermatology #cardiacsaroidosis

48 min
August 25 Episode 169 | Kimberly Cleary is trying her hardest to catch a breath
Kimberly Cleary lives in Chicago, where she is dealing with severe pulmonary Sarcoidosis. After a long path to diagnosis, she is working with her medical team to find a treatment that works for her. It has't been easy.

Show Notes:
Show notes:
FSR Sarcoidosis Summit: https://www.stopsarcoidosis.org/philadelphia-summit/
FSR helps patients navigate insurance: https://www.stopsarcoidosis.org/foundation-for-sarcoidosis-research-announces-new-partnership-with-patient-advocate-foundation-to-expand-insurance-and-disability-support-for-sarcoidosis-patients/
Sarcoidosis News Pulmonary relapse report: https://sarcoidosisnews.com/news/relapse-common-pulmonary-sarcoidosis-treatment-changes/
MORE FROM JOHN:
Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/
Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier
The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/
Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E
My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/
email me [email protected]
#sarcoidosis #sarcoidosisawareness #kidney #dermatology #cardiacsaroidosis

58 min
August 10 Episode 168 | Susan Smith is fighting cardiac sarcoidosis and possible more.
Susan Smith has cardiac Sarcoidosis. One day she was in spin class, and all of a sudden her life went into a spin. Sarcoidosis has raised its ugly head, and now she is taking things day by day as she works with her medical team to find a solution to what seems to be a worsening problem.
Susan contacted me following the release of the podcast saying she wished she had been more specific with respect to some of her diagnosis. She asked me to pass along the following information:
I wish I had made clear that I am being evaluated for autonomic small fiber neuropathy and my symptoms not only include weird sensations in the feet, dry eyes, and body temperature dysregulation but also bloatedness after eating and drinking, cold intolerance in my fingers and toes and sexual dysfunction.

Also, I wish I had explained more about how it was evident to me that I had cardiac sarcoidosis before getting the results of my first PET and my first cardiac MRI. I had had two 30 minute long episodes of ventricular tachycardia, a month apart. The second one came after being loaded up with Amiodarone at the hospital and beginning a daily dosage at home. Amiodarone is the most potent anti-arrhythmia drug available. The second episode of ventricular tachycardia did not result in my ICD firing because the Amiodarone had dampened the v-tach, making the heart beat less fast. The settings on my ICD were for a higher grade v-tach. The ER doctor shocked my heart back into rhythm. I remember it well because he did not sedate me. After the second prolonged v-tach, my primary cardiologist said to me that there must be “Infiltrations” in my heart. He threw out the word “sarcoidosis.” I read about cardiac sarcoidosis and compared my symptoms to those associated with other cardiomyopathies. It seemed to me that it was highly likely that I had cardiac sarcoidosis.

Show notes:
Johns Hopkins Sarcoidosis Event: https://aspire.hopkinsmedicine.org/project/49528
FSR helps patients navigate insurance: https://www.stopsarcoidosis.org/foundation-for-sarcoidosis-research-announces-new-partnership-with-patient-advocate-foundation-to-expand-insurance-and-disability-support-for-sarcoidosis-patients/
Sarcoidosis News Pulmonary relapse report: https://sarcoidosisnews.com/news/relapse-common-pulmonary-sarcoidosis-treatment-changes/
MORE FROM JOHN:
Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/
Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier
The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/
Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E
My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/
email me [email protected]
#sarcoidosis #sarcoidosisawareness #kidney #dermatology #cardiacsaroidosis

1 hr 3 min
July 27 Episode 167 | Tony Haskel is fighting cardiac sarcoidosis
Tony Haskel is fighting cardiac sarcoidosis. He has been battling the disease since 2022, and it's been a long road back. In fact, he will tell you he's nowhere close to where he once was or where he wants to be. Tony is a return visitor to the podcast, having first joined me in March of 2023. We both felt like it was time for an update.

SHOW NOTES
FSR helps patients navigate insurance: https://www.stopsarcoidosis.org/foundation-for-sarcoidosis-research-announces-new-partnership-with-patient-advocate-foundation-to-expand-insurance-and-disability-support-for-sarcoidosis-patients/

Sarcoidosis News Pulmonary relapse report: https://sarcoidosisnews.com/news/relapse-common-pulmonary-sarcoidosis-treatment-changes/
John's story from the White House on Col. John Ripley: https://www.wsls.com/video/news/2026/06/19/col-john-ripley-of-radford-receives-posthumous-medal-of-honor/

MORE FROM JOHN:
Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/
Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier
The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/
Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E
My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/
email me [email protected]
#sarcoidosis #sarcoidosisawareness #kidney #dermatology

49 min
July 13 Episode 166 | Tate Basildon was told he only had five years to live
Tate Basildon has been through it all. And he is still going through it. Pulmonary and cardiac sarcoidosis have invaded his life. He takes prednisone and suffers. Yet he says he wakes up every day lucky to be alive. Tate is a fellow podcaster who shares his stories on his own platform. In this episode of the FSR Sarc Fighter Podcast, he talks about the blows he's suffered at the hands of sarcoidosis, but how he still works as a chef and tries to keep his life on track.
SHOW NOTES
Tate's website and podcast: https://tatebasildon.com/
Sarcoidosis News Pulmonary relapse report: https://sarcoidosisnews.com/news/relapse-common-pulmonary-sarcoidosis-treatment-changes/
John's story from the White House on Col. John Ripley: https://www.wsls.com/video/news/2026/06/19/col-john-ripley-of-radford-receives-posthumous-medal-of-honor/

MORE FROM JOHN:
Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/
Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier
The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/
Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E
My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/
email me [email protected]
#sarcoidosis #sarcoidosisawareness #kidney #dermatology

1 hr
June 15 Episode 165 | Heidi Sedra is turning the corner in her battle with Sarcoidosis
Heidi Sedra is a healthcare professional, but that didn't make her path to diagnosis and treatment any easier. In this episode of the FSR Sarc Fighter Podcast, Heidi shares how sarcoidosis put her in the hospital -- and that's just part of the story.

SHOW NOTES
Episode 48 with Dr. Jinny Tavee https://beatsarc.podbean.com/e/episode-48-dr-jinny-tavee-is-a-neurosarcoidosis-specialist-with-a-unique-approach-to-fighting-the-disease/
MORE FROM JOHN:
Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/
Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier
The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/
Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E
My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/
email me [email protected]
#sarcoidosis #sarcoidosisawareness #kidney #dermatology

1 hr 13 min
June 02 Episode 164 | Why Sarcoidosis gets worse in some people and a bear episode for John
A new study from Europe takes a look at a clue as to why pulmonary sarcoidosis is worse in some people than others. And John has a close encounter with five bears.

Show notes
The study from Sarcoidosis news: https://sarcoidosisnews.com/news/genetic-variant-linked-worsening-lung-disease-sarcoidosis/
MORE FROM JOHN:
Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/
Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier
The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/
Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E
My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/
email me [email protected]
#sarcoidosis #sarcoidosisawareness #kidney #dermatology

23 min
May 14 Episode 163 | New hope for people with kidney and/or skin Sarcoidosos
New studies show new hope and understanding for battling sarcoidosis. In one, researchers in the Netherlands looked at the effectiveness of steroids in treating kidney sarcoidosis.
In other news there's seems to be promise in fighting sarcoidosis of the skin.
Show Notes

Mary McGowan's message on YouTube: https://www.youtube.com/watch?v=CGtM5MHSV88
Sarcoidosis News Report on steroids and kidney sarcoidosis: https://sarcoidosisnews.com/news/corticosteroids-rapidly-improve-kidney-function-renal-sarcoidosis/
The latest from the American Academy of Dermatology: https://www.stopsarcoidosis.org/dermatology-meeting/
MORE FROM JOHN:
Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/
Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier
The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/
Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E
My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/
email me [email protected]
#sarcoidosis #sarcoidosisawareness #kidney #dermatology

29 min
April 27Episode 162 | Veteran Dan Frank talks about service in the Navy and Sarcoidosis
It's clear that military veterans are more likely to suffer from Sarcoidosis than the general population. Dan Frank served as a Navy pilot. Years later, doctors told him he had sarcoidosis. While we don't know the cause -- the medical world and indeed the U.S Government, through the PACT Act, recognize that Military service may expose service members to conditions that cause sarcoidosis. In this episode of the FSR Sarc Fighter Podcast, Dan shares his story of life on an aircraft carrier and his battle with sarcoidosis.

Show notes
Go to the FSR home page for info on Sarcoidosis Awareness Month. https://www.stopsarcoidosis.org/
John's Story from the Aircraft Carrier: https://www.youtube.com/watch?v=tgRDhHf60XY
How to take the Veterans survey:
Log in to your FSR-SARC Patient Registry account.
Go to your Dashboard or Surveys/Studies tab.
Look for the Military Veterans Survey and click “Start” to begin.
Please note – you will need to complete the Baseline Questionnaire before having access to the FSR Military Veterans Survey.
https://www.stopsarcoidosis.org/patient-registry/

Support Royce Robertson: https://stopsarcoidosis.rallybound.org/Team/View/172803/Cycle4Sarc

MORE FROM JOHN:
Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/
Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier
The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/
Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E
My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/
email me [email protected]
#sarcoidosis #sarcoidosisawareness #particulatematter
59 min